tag:blogger.com,1999:blog-6097061559709200652024-03-28T06:27:18.424+00:00Cripple, baby!Living with disability and chronic pain in Ireland. Ehlers-Danlos syndrome, chiari malformation, hip dysplasia, dysautonomia, hiatal hernia/ GERD etc. Taking part in the campaign to reclaim the word cripple as a positive. Ex cancer patient (Hodgkin lymphoma). Very pro-choice #RepealThe8th. Atheist/ sceptic/ scientific thinker/ anti dangerous woo. Love art, photography, animals and vintage toys. Trekkie in between all that... May contain sarcasm and crappy puns.CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-609706155970920065.post-58667496928783313392021-02-18T14:59:00.006+00:002021-02-18T14:59:46.621+00:00Dundalk<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx4ZX4hdg092mdme7qut0xxVlfJD0ghElEpD1_Jqh2s6565r9JbQu7-qHVitN6sWvVMLuZ7StlwJNcqg3U1-OmYM84HEM8-8mSC003mKtz4-XyLPrL2Jdenho6le4l68p0jpEPAEaqeFM/s2048/151909920_3679409142149784_6543483017432799064_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="449" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx4ZX4hdg092mdme7qut0xxVlfJD0ghElEpD1_Jqh2s6565r9JbQu7-qHVitN6sWvVMLuZ7StlwJNcqg3U1-OmYM84HEM8-8mSC003mKtz4-XyLPrL2Jdenho6le4l68p0jpEPAEaqeFM/w449-h449/151909920_3679409142149784_6543483017432799064_n.jpg" width="449" /></a></div><br /><p></p><p><br /></p><p style="text-align: center;">Buildings closed down</p><p style="text-align: center;">around this old town</p><p style="text-align: center;">where would we be</p><p style="text-align: center;">without it</p><span><a name='more'></a></span><p style="text-align: center;"><br /></p><p style="text-align: center;">Dirt in the cracks</p><p style="text-align: center;">pulled up the tracks</p><p style="text-align: center;">a myriad of scenes about it</p><p style="text-align: center;"><br /></p><p style="text-align: center;">The water leaked in</p><p style="text-align: center;">rocked up to your shin</p><p style="text-align: center;">a voice said never</p><p style="text-align: center;">forget it</p><p style="text-align: center;"><br /></p><p style="text-align: center;">Race ya to there</p><p style="text-align: center;">meet at the square </p><p style="text-align: center;">the fella sang</p><p style="text-align: center;">ah sure ya know it</p><p style="text-align: center;"><br /></p><p style="text-align: center;">- Kitty xoxo</p>CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-86914338930950390152020-03-15T00:47:00.001+00:002020-03-15T02:19:09.538+00:005 Places to get your COVID-19 information<div class="separator" style="clear: both; text-align: center;">
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For those who know me in real life, you know that I am far from an alarmist. A realist sure, but I absolutely despise idle gossip and absolutely, seriously despise fear mongering, fake news and conspiracy bullshit.<br />
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What we are being asked to currently do in Ireland to combat the spread of <a href="https://www.youtube.com/watch?v=mIdHyNUZHdg" target="_blank">COVID-19</a>, and in many other countries, is by far that drastic. Like just stay inside as much as possible, for <i>YOUR</i> circumstances. Wash your hands, keep a metre distance from people at the very least (when possible), don't shake hands... these are not alarmist things to do. They are the very most basic things things we could change now to prevent a bigger issue in the future. We need to <a href="https://www.youtube.com/watch?v=RSJfwuAzY1M&feature=youtu.be&fbclid=IwAR1pwo_o3hdqy2IyM8iQyphitvo-wuYcasxIdweYQZd7DkpM5vxjacuLU3M" target="_blank">#FLATTENTHECURVE</a>, and this can only be done if we all take tiny measures.<br />
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Those who rely on work (those who still have a job to go to) cannot stay at home all the time, not everyone can work at home and not all businesses can close down completely. BUT you can keep your kids away from other kids (cancel all playdates), no trips to the grandparents, drinks at home for just two weekends rather than the pub, get your food delivered where possible if you are high risk or have cold like symptoms, and really other very basic measures that many of us are lucky enough (privileged enough) to be in a position to do.<br />
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It's not about shaming people in to complying; we are all in very different circumstances. It's all about doing what YOU can do to flatten the curve.<br />
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- Lads, it's really not much of an effort when you think about it. Unless you are a dick. Don't be a dick. Have some consideration for all the nurses, doctors, general front line staff, food suppliers and supermarket staff, general civil servants/ army etc who are currently working their asses off behind the scenes at this very moment, to ensure everything is in place for you for the coming days/ weeks. Having your fucking 10th pint of Harp tonight in a crowded pub is a real piss in their faces.<br />
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With all that in mind I have compiled a basic list of bloggers and official websites that you should definitely consider getting your pandemic news from. Being informed can help greatly if you are feeling anxious right now, but make sure you are getting the correct information from reputable sources. You may want to stay away from Jim Corr, YouTube and racist Mary from down the road right now (actually that's just good advice in general).<br />
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1. <a href="https://www.facebook.com/meathmamadoc/" target="_blank">Mama Doc in Meath</a></h2>
Mama Doc in Meath is a Facebook page, ran by well... a mama doctor in Meath. She frequently posts general medical advice as well as answering questions that come to her inbox. At the moment she is spending a lot of time debunking the constant flow of Internet bullshit that is being shared about the virus. If you see some of this possibly fake news, please think and stop.<br />
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Look who is sharing the source, have they backed up their claim with any citations?? Does the post begin with "I was sent this...", "my friend's scientist uncle in China just said..." -if so, they sounds like hearsay. Hearsay, particularly a random Facebook screenshot hearsay, is not your friend right now. Follow Mama Doc in Meath for her clear advice and debunking skills.<br />
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2. <a href="https://www.who.int/" target="_blank">World Health Organisation</a></h2>
It's an obvious one, but a biggie. If you are unsure of the basics and want to keep up-to-date on all the advice and international data, go here.<br />
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3. <a href="https://www.hse.ie/eng/" target="_blank">The HSE</a></h2>
Not a fan of our sometimes terrible public healthcare system in general, but for the correct and current news relating to cases in Ireland, this is where you need to go. If you live outside Ireland, follow the daily advice from your own health service. Check their website or social media, rather than (again) listening to hearsay.<br />
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4. <a href="https://ncov2019.live/" target="_blank">nCoV2019.live</a></h2>
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There are many websites like this one which show in near realtime the cases around the world, including deaths, serious and recovered stats.<br />
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I particularly like this site as it was created by a high school student in the US. For those who are feeling the constant rush of anxiety lately, and may have had to switch off social media entirely, I took some relief in knowing the stats of those who had recovered -it's not something we discuss much obviously, but it's helpful to know. This is all temporary, this is all temporary... We need to keep reminding ourselves that.<br />
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5. Follow positive social media posts such as...<br /><a href="https://www.facebook.com/irishpainies/photos/a.111331007141691/116187943322664/" target="_blank">This one I have created on the the Irish Painies Facebook page</a></h2>
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Social media can be quite the downer at the minute, the news obviously is just serious. But there are some really beautiful community spirit stories coming about on Facebook and Instagram, that need to be highlighted. Even in the face of all the unknown, human kindness can prevail. It's hard to find such gems in between all the noise, so I posted this thread up and will update regularly. Please feel free to add if you find any news stories or posts that apply, and tag a friend who you think could benefit from focusing on some of the positives right now.<br />
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<i><b><span style="color: magenta;">Stay safe out there everyone xoxo</span></b></i></h3>
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-56164586423302139362020-03-04T19:51:00.002+00:002020-03-04T22:16:13.061+00:00Pregnant and Disabled As some you probably know, if you follow me on <a href="https://www.facebook.com/cripplebaby/" target="_blank">Facebook</a> or <a href="https://www.instagram.com/kittypotpie85/" target="_blank">Instagram</a>, I'm currently pregnant. It's been a very tough few months, trying to navigate not being on my usual wonder drugs that keep some of my worst symptoms at bay, while adjusting to the increase of symptoms that the pressure of pregnancy has placed on my body -as well as all the pregnancy usuals. We are delighted though, and cannot what to meet are little muffin.<br />
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I'm lucky enough to be in a maternity hospital and under a team of doctors, as deemed a bit higher risk than average. I won't go in to all the nitty gritty of how my health has declined throughout the pregnancy in this post, and what my doctors are taking in to consideration, but I might do a video for the <a href="https://www.youtube.com/channel/UCB7lb-s4aCHt66gofIMprTw" target="_blank">#EDS4IRE YouTube channel</a> outlining my personal story further. Here's just some of the increased issues I have faced to date, and indeed you may face too if you have these conditions. Just remember, even if your health profile mirrors mine, everyone is totally different! So take with a pinch of salt if you are wondering what to expect in your own pregnancy.<br />
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Ehlers-Danlos Syndrome</h2>
With pregnancy and surge in hormones comes lax joints, this is true for every pregnant person. If you have a condition where your joints are already lax... well you get the picture. The increase of subluxations started very early for me, I knew to expect it but it was really immediate.<br />
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Often when new doctors ask me which of my joints sublux and dislocate, I usual start by telling them it would be easier to point out the ones that rarely dislocate. These would be my ribs, my jaw and the unstable neck (although I find it hard to tell when the neck goes if that is a real "sublux" or what is happening in there). These three areas have increased immensely, along with all the usual suspects.<br />
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POTS/ Dysautonomia</h2>
I remember reading that some people with POTS actually experience less symptoms during pregnancy, like wow how interesting... as I am chronically cursed though, I do not fall in to this category. Now in my third trimester, my heart is particularly bad. The increase in tachycardia has been hard to deal with, and I'm even less mobile than I had been. Even when not in agonising pain, I can't walk more than two minutes without feeling like I'm having a heart attack -on good days.<br />
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Chiari Malformation/ Neck Instability/ General</h2>
Without my medications (especially my beloved Baclofen), things have been VERY bad. Muscle spasticity, increased noise in my ears, pressure headaches, spinal pain, tense muscles etc. etc. - have all increased dramatically. There really is no way to sugar coat it, and I wouldn't want to lie here. Luckily I have a new wheelchair from the HSE (I'll do a separate post introducing her).<br />
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So that's kind of all the main craic in relation to my agonising pain lol... My mobility is probably the worst it has been in years, and we have had some tough decisions to make, but we know it will be worth it in the end and just trying to focus on that. It has of course been lonely (most the people I know are also Disabled or chronically ill, so there isn't a stream of visitors and there's been plenty of days where I couldn't even sit up in bed, even if there was).<br />
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My time inside alone has given me plenty of prep time as well as thinking time. I would love to attend parent/ baby groups if possible when our wee girl is here and I'm able to, everyone needs to see adults for there own sanity and online forums aren't as great for babies as they are for adults. It occurred to me though that there will be inherent and obvious differences between myself and Bicky and other parents, with me being Disabled and him being my carer.<br />
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With this in mind, and because I'm a real "someone should do that" type of person, I thought it might be worthwhile setting up a parents groups in Co. Louth for those of us who are disabled. Some of you might recall that I run <a href="https://www.facebook.com/groups/irishpainies/" target="_blank">a chronic pain support group on Facebook called Irish Painies</a>. The parents' group will be an add on to this online forum. You can find more details and <a href="https://www.facebook.com/irishpainies/photos/a.111331007141691/111330517141740/?type=3&theater" target="_blank">express interest here on the public page</a>.<br />
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-16989583709437242492020-02-29T19:20:00.001+00:002020-02-29T19:20:34.707+00:00 #EDS4IRE Rare Disease Day 2020<div class="separator" style="clear: both; text-align: center;">
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🧡 I’m supporting Rare Disease Day for all my sisters and brothers worldwide who have the rarer forms of Ehlers-Danlos Syndrome. </div>
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<br />🧡 I’m supporting Rare Disease Day for my baby bump, who will be born in to a country that does not facilitate basic healthcare needs for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.</span></div>
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<a name='more'></a>🧡<span style="background-color: white; color: #101214; font-size: 16px;"> I’m supporting Rare Disease Day for all those who are yet to be diagnosed with EDS, HSD or other conditions. It took me YEARS to officially receive my zebra stripes, and that’s all too common in our community -especially in Ireland where we have no appointed consultant. We are more than hypermobile joints and dislocations, these are complex conditions that effect the whole body and can seem so random.</span><span style="background-color: white; color: #101214; font-size: 16px;"> </span><br />
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<span style="font-kerning: none;">🧡 I’m supporting Rare Disease Day because we need expert medical specialists who understand this, and we need early diagnoses and intervention. </span></div>
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<span style="font-kerning: none;">Today I choose to be a unicorn, because every other day I’m a zebra and go unseen by doctors in Ireland. Today I choose to be heard and shout for others #EDS4IRE #ZebraStrong #ZebraArmy #RarelyDiagnosed #HealthcareNotAirfare</span></div>
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<span style="font-kerning: none;">Sign the #EDS4IRE petition and get involved at <span style="-webkit-font-kerning: none; color: #420178; font-stretch: normal; line-height: normal;"><a href="http://www.eds4ire.ie/">www.eds4ire.ie</a></span></span></div>
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-23057487368732880002019-10-06T02:49:00.000+01:002019-10-06T02:55:52.114+01:00Why I'm an advocate for the flu vaccine<div class="separator" style="clear: both; text-align: center;">
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<span style="font-kerning: none;">In 2014 I contracted the flu. My immune was still down from chemotherapy, and I stupidly, completely forgot to get the flu vaccine. This was probably one of the biggest regrets of my life. You see what most people consider "the flu" is a mere cold. We are prone in Ireland to believe that the flu is quite common, we use the word nearly in every day life to mean we are feeling unwell. We think common colds, when bad, is the flu. Not everyone will even contract the flu in their entire life. Because of this, we have downgraded the virus in our society, the lines are blurred.</span></div>
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<span style="font-kerning: none;">I was on a high finishing treatment for Hodgkins lymphoma, ready to get my life back on track with college and work. I wasn’t thinking about the flu, or the flu vaccine, or anything medical at all.</span></div>
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<span style="font-kerning: none;">In 2014 I contracted the flu. I thought cancer was bad enough, I thought Ehlers-Danlos syndrome and my comorbid disabilities were bad enough ...but I was about to find out how unwell I could actually get. Weeks of delirious shaking and sweating and sleeping eventually subsided. Eventually I could stand up without falling over, eventually I could speak properly.</span></div>
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<a name='more'></a>Unfortunately it wasn't the end. The flu left and exhaustion remained, gathering speed. I slept for 20 hours some days, sometimes whole days with no break in between, quickly trying to eat a sandwich before I knocked out again, my (now) husband trying to shake me awake. I could hear his voice but I was completely paralysed, trying to scream through the numb body I found myself trapped in. It was terrifying and doctors had no answers. Good days were few and far between. Eventually it was put to me that I had developed post infection ME (myalgic encephalomyelitis) but there was still no help from medical professionals.<br />
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<span style="font-kerning: none;">In 2014 I developed the flu. A lot of the two years after is a blur. Gradually, so so gradually, I could feel some of the effects subside. I knew myself that sometimes these symptoms, when caused by infection, can get better with time. No magic cures, no special diet, just plain old basic luck. Nowadays I only have phases of falling unconscious asleep, usually a few days a month, sometimes I get away with once every two months. On top of that I have normal fatigue expected with my other health conditions. I’m still trying to build back muscle I lost while having spent so much time asleep, and being disabled on top of this doesn't help.</span></div>
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<span style="font-kerning: none;">For this and for so, so many reasons, I am a strong advocate for vaccines, including the flu vaccine. There is a lot of misinformation out there that needs to be fought. And while you may not have ever had the actual flu in your life (as it's rarer than you think -a bad cold is not the flu), consider who you meet and sit beside every day who may appreciate you being vaccinated. Those going through cancer, those with low immunity especially those who cannot get vaccinated, your pregnant friend, or their new born baby, your elderly parent or neighbour. Let's not play devils advocate when the answer to saving someone's life could be €20 and 20 minutes of your time. If you have the medical card, and a chronic condition such as asthma, or if you are caring for someone, you may be entitled to the vaccine completely free of charge in Ireland. Speak to you local pharmacist or GP for all the correct information.</span></div>
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<span style="font-kerning: none;">I did this for me, I did this for you</span></div>
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<span style="color: #294387; font-kerning: none;">#<span style="color: #2b4386; font-kerning: none;">forjudeforeveryone</span></span><span style="color: #16191f; font-kerning: none;"> <span style="color: #294387; font-kerning: none;">#</span><span style="color: #2b4386; font-kerning: none;">forcian</span> <span style="color: #294387; font-kerning: none;">#</span><span style="color: #2b4386; font-kerning: none;">fordad</span> </span><span style="color: #16191f; font-family: "apple color emoji"; font-stretch: normal; line-height: normal;">🖤</span></div>
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<span style="color: #16191f; font-kerning: none;">Check out<a href="https://www.facebook.com/forjudeforeveryone/" target="_blank"> <span style="-webkit-font-kerning: none; color: #2b4386;">For Jude, For Everyone</span></a>.</span></div>
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<span style="font-kerning: none;">• For information on receiving the flu vaccine in Ireland:</span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="https://www.hse.ie/eng/health/immunisation/pubinfo/flu-vaccination/about-the-vaccine/?fbclid=IwAR2PAQs1-We08DwEHB_znpz1u-GttPr2IgMhW1kptyv_VncviMVZvZggQ_k" target="_blank">HSE Flu Vaccine</a></span></div>
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<span style="font-kerning: none;">And</span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="https://www.hickeyspharmacies.ie/services/flu-vaccination/?fbclid=IwAR1mt2AUX821ntDO862aXb0Te5ymA2giy46CyKMJhgN70bzmm1dSNLWAg9w" target="_blank">Hickey's Phramacy</a></span><span style="color: #16191f; font-kerning: none;"> </span></div>
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<span style="font-kerning: none;">• For information about ME:</span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="http://www.irishmecfs.org/what_is_me_cfs.html?fbclid=IwAR1xpqxOJXaCiNiZmnEFIVJhWg6_YXEaXWd6COIqFfn8NokIW6ApMF56-dc" target="_blank">Irish ME/ CFS</a></span></div>
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<span style="font-kerning: none;">And for ME support group:</span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="https://www.facebook.com/groups/303166603070081/?fref=mentions&__xts__%5B0%5D=68.ARAKFeNBsHXAz8isH-pPn4pGELQm9PSLmBiB1MKc4npbVHhwYrCFEsh4dG5AmD_ozbxmOLlm5_1xLNjyCkqBDlG-XIRe-f08sWS1_Fn1eEjRMGPWDXWTAwEpl6Z4MDXFiuFUNaPj1wU5M3QNDX-JqUyUiayUClJ4qCc1TOVuInTe21VCWhZAm2NKEZyRe0nnaPmxPUpOpdvO9GICATalXUTyv4HvTQD_lLwzppPGfj7-E_0u-qyVvjCeSP2nFkhvSbjzrug_K2qfV7alwmYBlZK0Hkodl0lkvq6RFIeOEiTSHGawKNsqdkW-y-rNM6DN8bkKhf3AtSOTtku2wfzj_p5k3A&__tn__=K-R" target="_blank">ME Ireland</a></span></div>
CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-28681737480406733072019-08-12T21:19:00.002+01:002019-08-12T21:21:43.149+01:00My July Sainsbury's vegetarian/ vegan food haulHi veggie food fans! Thought I'd share with all of you some of what I picked up on my July trip to <a href="https://www.sainsburys.co.uk/" target="_blank">Sainsbury's</a> in Newry. For those living in NI (or indeed anywhere Sainsbury's exist) or on the border like myself, then I strongly suggest taking a trip in to your local store who have upped their serious vegan/ free from game the last couple of years. Most of these items were vegan friendly, with a couple being only vegetarian.<br />
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For those in the know, <a href="https://veganuary.com/" target="_blank">Veganuary</a> has became a popular phenomenon in which usual meat eaters or vegetarians decide to transition to an all animal-free diet for the month of January. With the decline of meat eating during this post-holiday diet season, naturally the bigger food chains would pick up on the trend and produce what the consumers want to see - A varied range of food suitable for those who don't, or can't, consume dairy, eggs, gelatine and other every-day meat byproducts. This includes meat alternatives, which are particularly a transitional favourite to many who have consumed meat their whole lives and are going cold turkey (excuse the pun), as well as general "junk food" favourites. After all, being vegan or vegetarian is not about being "boring" or healthy or denying treats for many. It's about finding a comfortable balance between your ideology (love for animals, wanting to live a more sustainable lifestyle, and so on), while feeling you and your family can easily adapt. It shouldn't be hard and only for the elite.</div>
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Following on from January each year, store bosses obviously decide to take many of these products off the shelf, as numbers in veganism decline again for another year. However many of us have noticed a trend the last couple of seasons -higher proportions of those who try the change for the month either remain as vegan, or drastically adapt their normal meat product consumption. Each January, we are seeing more and more products saved from the February chop. Hence the growing number of delicious and versatile alternatives to test out.</div>
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I may not be the biggest fan of junk food at times, but only because I have very basic tastes (and terrible digestion!) -But I am by no means a food snob. I can't imagine what its like to have several little kids too, and trying to get them to eat a kale salad... I'm sure that's loads of fun for parents. So zero judgement here (which can be RAMPANT in the veggie community). If anything I take major, <i>major</i> issue with the anti-GMO/ anti-science rhetoric which is widespread in the community and attracts fear-based advertising by corporations. Naughty, naughty lying corporations.</div>
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With the rise of these tasty treats, I am inclined to buy more. Especially if they freeze well, and myself and pescatarian husband can defrost at our own leisure. Our monthly/ bimonthly trips across the border for food to make us chubby has become one of our special days out. </div>
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Here are some of my favourites and not so favourites from our July fat-fest:</div>
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Naturli Vegan Butter Block</h2>
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After cheese, I think one of the main food items I hear people say they couldn't live without is "real butter". Especially if you're Irish. I think even if it's something you don't eat every day, the thought of never experiencing it again scares people. With certain foods we associate memories, and for many here on the emerald isle, we have childhood flashbacks of mountains of butter on homemade brown bread, potatoes and so on. It's not just a food -it's tradition, it's love, it's family. So butter is a toughy!</div>
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When I first decided to go diary free a few years ago there was very limited option for spread in Ireland, particularly in my town. One, saltless, tasteless, expensive brand and one accidentally vegan option from one of the bigger stores, which later discontinued. Now we have <a href="https://metro.co.uk/2019/03/19/flora-goes-completely-vegan-removes-dairy-entire-spread-range-8940843/" target="_blank">giant brand Flora who recently decided to make all their butter products vegan</a>! A massive step. I sometimes can't believe how far things have came in only a couple of years, even if there is a lot of corporate band-waggon jumping.</div>
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But many of these haven't been able, or just didn't want to try, emulate the consistency of real butter. Until now. Naturli vegan butter is hard, only melts after being out of the fridge a while, smooth and creamy and has that cold, unmistakable feel. It's by far the most real butter-like dairy-free product I have yet to come by. Of course it's fattening, of course it's not a health food, but only silly people think that's what all vegan food has to be. My only constructive criticism would that I would like a bit more salt (as butter is usually very salty), but that is something easily added. This product is incredible on potatoes. So no need to stamp on all those sacred childhood memories.</div>
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<b>10/10</b> for nostaligia.</div>
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Linda McCartney's Vegetarian Chicken & Leek Pies</h2>
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The husband loves anything that has gravy and has previously bought the "country pies" (which consist of a fake beef style meat with gravy and are readily available where we live). He enjoys the taste of the inside, and the crusty top, however the cooking is just a ridiculous, never-ending saga which results in soggy pie bottom about 85% of the time. And no one wants a soggy pie bottom. </div>
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Initially we blamed our old cooker which was from the dark ages and had no fan-assist, and then when we bought a new cooker we toyed with the idea of the product experiencing a de-frost, then a re-frost -changing it's ability to cook above a mush level of 10. We had the boys down in the lab analyse each attempt to achieve the promised crispy base (and within the suggested cooking time) but we can't conclude an exact reasoning for such immense failure. Unfortunately, the chicken and leek pie, which has a creamy, soup-like sauce in the centre, has proved no better. On our last try we took the pie casing off which only minorly helped, and of course runs the risk of absolute mayhem through leakage. Pie inside leakage is second in offence to soggy pie bottom.</div>
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For this reason L McC pies of all flavours get an undercooked <b>2/10</b>. </div>
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Vivera Fish Fillets</h2>
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Vivera has to be by far one of my favourite product brands of 2019. They are now readily available from Tesco, as well as Sainsbury's. They have vegetarian and vegan products, marked easily on their packaging as colours: blue is for their vegan products and yellow for their vegetarian only range. Whether you crave salty, shredded shawarma style kebab or a steak-like texture, Vivera does it all. More importantly, their products each have a unique taste and feel, while many brands find it difficult to mass produce such varied flavouring (I'm looking at you, Quorn!). </div>
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This fish-like product didn't disappoint, but as there are so many on the market at the minute with similar taste (after all, if you're going to do fake fish, white fish -with it's tasteless, bland qualities- is the easiest to emulate),</div>
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I score this tasty yet common product a <b>7/10</b>. </div>
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Fry's Battered Prawn Pieces</h2>
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Keeping with the fish vibes, but upping our game, I introduce you to Fry's battered prawn pieces. <a href="https://www.fryfamilyfood.com/uk/" target="_blank">Fry's</a> are a well-established vegan brand, but are difficult to find outside of the realms of online shopping. As I said previously, many fake fish products focus on the white fishes which are easy to copy. These crispy treats were surprisingly similar to scampi you might find in a chippy. Of course nothing will ever be exact to something as complex as a prawn, but for taste and texture Fry's are winning the look-alike award -and hey, unlike most brands, at least they are trying! They had a real Christmas snack feel, and I hope they are more readily available in the future.</div>
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<b>10/10</b> for effort and execution. </div>
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Tofurky Deli Slices</h2>
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Another brand that pops up from time-to-time, but has an online presence as well a history of producing quality, vegan products is <a href="https://tofurky.com/" target="_blank">Torfurky</a>. These thick, salty slices are very reminiscent of beef sandwich slices and the texture and taste is truly uncanny. Even if it's not a food I would eat all the time, it definitely had to make the list for likeness alone. If you are missing smoked meats, look no further. Sooo good in a sandwich with the butter mentioned above, or even with English mustard for an extra kick. Eat warm if you want more of a bacon feel.</div>
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A respectful <b>8/10</b> for this sandwich go-getter.</div>
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<b><span style="font-size: large;">What products have you tried recently that really stood out?</span></b></div>
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<b><span style="font-size: large;">Any tips for new vegans?</span></b></div>
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<b><span style="font-size: large;">Comment below. </span></b></div>
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-38204391612536521562019-03-08T23:38:00.001+00:002019-03-09T02:05:23.118+00:00What disabled people want on International Women's Day<div class="separator" style="clear: both; text-align: center;">
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<span style="font-kerning: none;">Today is International Women’s Day. A day when we consider the inequalities in society, including wage gaps, social standing, opportunities, domestic abuse. The often invisible and overlooked females in our communities and workplaces.</span></div>
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<span style="font-kerning: none;">Now stick that person in a wheelchair, or a walker, and isolate them with inadequate public transport, tell your children to stop looking at them or that they can't ask questions, take away representation in films and tv and books, create buildings as tall as the skies and pile obstacles all along the sidewalks and pathways. Don't call out when people take our parking spaces, or skip us in queues, or make assumptions based on our young age... refuse to listen to those affected by all of the above.</span></div>
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<span style="font-kerning: none;">Don't get me wrong -all my aids are works of beautiful engineering that gift me freedom. They're not the villain in my story. But there is only so much they can do in a society not built for them.</span></div>
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<span style="background-color: white; color: #16191f; font-family: "georgia"; font-size: 16px;">Look around you. Look at us. Take a day out and see us all over your community. Sit with a coffee in the shopping centre and people watch. Count all the chairs and walkers and canes and crutches.</span><br />
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<span style="font-kerning: none;">I didn't choose to end up as a disabled woman, but it's now an integral part of my being that I wouldn't alter in many ways. I am proud to be disabled and I don't believe disability is a dirty word.</span></div>
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<span style="font-kerning: none;">More than anything I feel excitement today. I can feel a want for progressive thinking in the air, as I read article after article, social media posts from my disabled sisters and brothers. We are overtaking platforms by sheer force, and interjecting ourselves into the conversation.</span></div>
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<span style="font-kerning: none;">See us, include us, ask why we aren't represented on tv in the numbers seen in real life. Call out event organisers that exclude us -both as hosts and as the audience. Open dialogue with business owners about accessibility. Think twice before you park on a footpath or across a disability spot. Talk to your children about mobility aids and hearing aids and prosthetics so they don’t fear the unknown.</span></div>
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<span style="font-kerning: none;">Today we just want you to look around and see us. If you don’t see us there, ask why.</span></div>
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<span style="font-kerning: none;">Happy International Women’s Day to all.</span></div>
CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-38026733011355341422019-02-28T13:12:00.001+00:002019-02-28T13:27:32.711+00:00Why Rare Disease Day is important to me<div class="separator" style="clear: both; text-align: center;">
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<span style="font-kerning: none;">Today is Rare Disease Day. This day is for everyone with rare medical issues to spread awareness of their various conditions, and to take pride in our differences. Ehlers-Danlos syndrome is a connective tissue disorder -we produce faulty collagen to be exact. Simply put the glue that holds our joints together over stretches and so our joints easily sublux and sometimes even fully dislocate. On the other end of the joint hypermobility spectrum is Hypermobility Spectrum Disorder. These complex conditions can effect so many parts of our bodies, but for many of us the main symptom is chronic pain. EDS has 13 subtypes, and while EDS itself is seen as a rare disorder, Hypermobility Ehlers-Danlos Syndrome (hEDS) is the least rare (and the most common) form. Because of this hEDS may be viewed as a rare condition, while others view it as simply "rarely diagnosed". It's also rarely known -by the general public and my medical professionals. Rare Disease Day reminds us to show the world our zebra stripes proudly; to stand up and be counted amongst a group of individuals who usually go unnoticed. </span></div>
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<a name='more'></a><span style="font-kerning: none;">Like many countries there is very little awareness around Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder In Ireland. However we also fail patients here with lack of qualified rheumatologists and physiotherapists, and other specialists who are often needed to assist in our comorbid conditions. The HSE have 0 appointed consultants for EDS and HSD, with Simon Harris TD often stating that in fact all rheumatologists are qualified. This is an absolute insult to every patient in this country who has walked into an appointment after years on a waiting list to be told they have either never heard of the condition, don’t believe in it or simply do not know enough to diagnose it! A couple of private rheumatologists who have taken an interest in us is not satisfactory for the number of patients needing treatment.</span></div>
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<a href="http://www.eds4ire.ie/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img border="0" data-original-height="593" data-original-width="1600" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO2L8Lrwon9BaZ3XDvv86QJgBzJSvhVloetWTRgNIimbO58BDBEEehqNQUsmegkPvfUohQqC9J-dHDTKldvoQKgajTI3_3Dvd0voJIuuz3MLrrJxwWr0_k1DJAzjQPBhuI4cmSbBla9k8/s640/45304543_186803318823063_6016414248643592192_o.jpg" width="640" /></a><span style="font-kerning: none;">Our apparent treatment centre, Harold’s Cross Hospice, regularly turn away EDS patients saying they do not in facts treat EDS like the HSE insists they do, and do not receive funding for us. A token patient here and there is not the solution to the growing number of children and adults who need rehabilitation, and even basic care.</span></div>
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<span style="font-kerning: none;">The HSE have no idea of the number of patients with hypermobility conditions in Ireland, and have in the past cited laughable figures. There is also complete denial that EDS and HSD are multi-systemic conditions, even though this is the understanding worldwide. We are more than just bendy joints and dislocations.</span></div>
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<span style="font-kerning: none;">The diagnostic criteria is not used here, the correct terminology is not implemented, and simply put we do not exist in Ireland according to the HSE.</span></div>
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<span style="font-kerning: none;">Whole families are suffering in some cases, not everyone can afford to go privately all the time or indeed to travel to the UK. Early diagnosis and intervention is needed and we cannot obtain either without a real hypermobility clinic and qualified consultants.</span></div>
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<span style="font-kerning: none;">Please sign our petition on the website and get involved if possible. We exist every day of the year and not just on Rare Disease Day, and we deserve real healthcare here at home-</span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="https://www.eds4ire.ie/sign-the-petition" target="_blank">https://www.eds4ire.ie/sign-the-petition</a></span></div>
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<span style="font-kerning: none; text-decoration: underline;"><a href="http://www.eds4ire.ie/" target="_blank">#EDS4IRE</a></span></div>
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<tr><td class="tr-caption" style="text-align: left;"><i>The zebra is often used a symbol of rare disease, particularly for EDS. From the medical saying: "when you hear hoof beats think of horses, not zebras". Except sometimes the answers are less obvious -sometimes it's zebras <span style="background-color: white; color: #4a4a4a; font-family: "helvetica"; font-size: 14px; white-space: pre-wrap;">♡</span></i></td></tr>
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<i><span style="background-color: white; color: #393939; font-family: "georgia"; font-size: 16px;">I originally wrote this piece for the </span><a href="https://www.eds4ire.ie/blog-1/" style="-webkit-text-stroke-color: rgb(57, 57, 57); font-family: Georgia; font-size: 16px;" target="_blank">#EDS4IRE blog</a></i></div>
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-21366891098394897282019-02-27T16:27:00.001+00:002019-02-27T17:01:41.822+00:00FUCK YOU, BELLE GIBSON<div style="-webkit-text-stroke-color: rgb(26, 26, 26); -webkit-text-stroke-width: initial; color: #1a1a1a; font-family: Times; font-size: 16px; font-stretch: normal; line-height: normal;">
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<span style="font-kerning: none;">Some months ago I came across yet another health guru spewing the usual crap of TOXINS and CHEMICALS (OH MY!), and using such words in a way that you immediately know they have little concept of what either term actually means. Except this charlatan was different. This modern day snake oil salesperson was caught out, <a href="https://www.theguardian.com/australia-news/2015/apr/22/none-of-its-true-wellness-blogger-belle-gibson-admits-she-never-had-cancer" target="_blank"><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 233); color: #420178;">in a very public way</span></a>. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><i>Source: Facebook</i></td></tr>
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<span style="font-kerning: none;">For those of you that don’t know, bushy-tailed, bright-eyed Belle Gibson created an app (and later a book) called ‘The Whole Pantry’. In this she began her mountain of lies -having brain cancer, her cancer spreading all over her body, saying no to conventional (IE real) treatments and insisting that she was being kept alive by whole food goodness, #WokeAsFuck and all that. In 2015 media investigations revealed that not only had she fraudulently collected money telling her followers it was for charity, but she had in fact made her whole cancer story up from thin air and even <a href="https://www.theguardian.com/society/2015/mar/11/belle-gibson-book-publisher-never-verified-cancer-survivor-health-claims" target="_blank"><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 233); color: #420178;">lied about her age</span></a> as well many other details of her life. She was a pathological liar, wanting fame, attention, pity and a quick buck, and it wouldn’t stop there. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><i>She lied for years about having cancer and made up doctors - Source: The Whole Pantry</i></td></tr>
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<span style="font-kerning: none;">When pressed in interviews she blamed other people (including imaginary), played the victim, tried to distract from the questions being asked and most importantly -played down her role in persuading cancer patients to follow her example; health advice she had dished out so easily with little regard for others wellbeing. And that really is her biggest crime of all. She spoke directly with cancer patients and give them hope and guidance, she pretended to be one of them and stood as a beacon of health and wellbeing. She preyed on the most vulnerable and right out lied that she could prevent them from dying, as she had done with herself. </span></div>
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<span style="font-kerning: none;">But we aren't blameless here. We are a gullible society, wanting to believe in magic and fairytales, <a href="https://www.theguardian.com/society/2015/mar/11/belle-gibson-book-publisher-never-verified-cancer-survivor-health-claims" target="_blank"><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 233); color: #420178;">too lazy to look beyond and question</span></a>, too egotistical to say "I don't know enough about this topic" and maybe we should listen to the real experts. We want hope and romance and we want it delivered by blonde white women in stylish clothes.</span></div>
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<span style="font-kerning: none;">Because of this we only ever hear of those rare, freak accounts of people recovering from cancer when there were initially told they had no hope. In other instances we read bullshit stories online of how someone forwent all treatment for A, B and C (insert “natural” nonsense here), only to read their story and actually see they had their initial treatment. It some cases for example, this is surgery to remove the cancer. While they may have decided against their secondary medical care such a chemotherapy, they have in fact had treatment, so don’t be fooled by thinking surgery is nothing. As another example, in my own case (Hodgkin’s Lymphoma), chemotherapy was my primary medicine with radiotherapy being used after as a longevity tool. Having my primary care rid me of nearly all of the cancer and without my follow up of radiotherapy I could have easily lived. Like with those sneaky online tricksters, this is not the same as having zero medical attention. But none of that's magical, and no one cares about the truth. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><i>Belle Gibson had conned the world - Source: ELLE Magazine</i></td></tr>
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<span style="font-kerning: none;">We rarely hear of the far more common occurrence of the cancer patient who decides against treatment (after reading rubbish like from this shitehawk, David Wolfe, and of course “The Truth About Cancer”, etc. etc.) who fall gravely ill and then have to go back to the doctors with their tail between their legs begging not to die. I cannot express how common this is, I have conversations with these patients online all of the time. Trying to be supportive while also pushing them to go for that test 6 months down the line. All because of scam artists who say you can aLKaLiNe YoUr BodY, jUice CuRes aLL, sUgAr iS a ToxiN. Do me a favor, if you plan to make mad claims off a clickbait article you read on Facebook, just don’t. You are as bad as this charlatan whether you are selling something or not, whether you are being intentionally dimwitted or not. It takes two minutes to go “wait, wait a second..</span><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 0); color: black;">. my knowledge of anything scientific and medical is extremely limited so maybe this article from healthgreeninfowap.org.com isn't</span><span style="font-kerning: none;"> the best resource and I shouldn’t be giving out medical advice”.</span></div>
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</span><span style="font-kerning: none;">Now in 2019, <a href="https://www.news.com.au/lifestyle/health/belle-gibson-facing-jail-time-if-she-cant-pay-410000-fine/news-story/660ef82b21de0dfa09a86b8b673b1b75" target="_blank"><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 233); color: #420178;">yet to pay her $410,000 fine and dodging court dates repeatedly since 2017</span></a>, Belle-shithawk-Gibson returns from a <span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 233); color: #420178;"><a href="https://www.news.com.au/lifestyle/real-life/news-life/a-current-affair-catches-cancer-con-artist-belle-gibson-returning-from-lavish-fiveweek-holiday/news-story/db363eae05472a09b8667528b9761e82" target="_blank">5 week luxury safari in East Africa </a>a</span>nd rightly so, those she conned (both in terms of money, and their lives) <a href="https://www.9news.com.au/2019/02/27/13/30/belle-gibson-a-current-affair-safari-cancer-con-artist-leaves-country?fbclid=IwAR0C118egsQL2RRBL9ntKemUasSaBB2a00n2nicQI1xty-dc9wnwtbd50eE" target="_blank"><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 233); color: #420178;">are annoyed</span></a>.</span></div>
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<span style="color: #141414; font-family: "georgia";">People make mistakes and perhaps shouldn’t have that held over them forever, and also can have serious mental health issues beyond what we might notice straight away. But FFS -leaving the country while this is hanging over her head? Laughing all the way it would seem at the judicial system by not paying one cent, and by pretending she hasn’t been given a second chance to avoid jail time.</span><br />
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<span style="font-kerning: none;">She has never shown true remorse or admittance of her dangerous and stupid actions, there's always a "but", a doe-eyed glance and of course tears. I think until now, watching the documentaries, seeing her being interviewed, I usually had a twinge of sympathy for the clearly unwell mind that is Belle Gibson. Whatever way she processes information, whatever has happened to her in her life to have this compulsion to lie, the actual confusion in her face as she continues to push herself down this rabbit hole with each question she answers… It’s an innate human reaction to want to see the good in people, to want to think they have remorse and understand their actions even when they are unable to express that outwardly.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><i>Source: Facebook</i></td></tr>
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<span style="font-kerning: none;">But with each appearance of her stupid face (yes I’m being childish now) I remember my own cancer diagnosis. I remember the gut wrenching feeling that I’m going to have to tell people and they are going to be devastated, I remember the first time the chemotherapy burned my skin, I remember looking around the room knowing everyone there for treatment wouldn’t survive this, I remember the hair falling out, and the eyebrows, I remember having to leave college and putting my life on hold completely, I remember the steroids swelling and my skin aching, I remember the insensitivity of wannabe health experts on a topic they knew zero about, I remember the “what’s with the headscarf” and the survival guilt -fuck, the survival guilt. And I remember each and every time I’m in an online support group and someone says they have said no to chemotherapy and/ or radiotherapy because some moron on the internet has promised them the world. Some moron like you, Belle Gibson. <br />
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So when I have that feeling, that twinge of pity for your life being temporarily in the shitter, I now just think FUCK YOU, BELLE GIBSON -from each and every one of us. </span></div>
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<span style="font-kerning: none;">If you are yet to follow this story, sit back and get ready to cringe and enjoy this documentary from 60 Minutes Australia. </span></h2>
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-33049131685541313902018-12-31T20:18:00.003+00:002018-12-31T20:18:52.221+00:00[Video] Happy New Year from my ME flareup<div>
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<a href="https://www.instagram.com/p/BsBvlY4F-qX/?utm_source=ig_embed&utm_medium=loading" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
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<a href="https://www.instagram.com/p/BsBvlY4F-qX/?utm_source=ig_embed&utm_medium=loading" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">• Silent Valley • I’ve been wanting to do this walk for a very long time. Slept for several hours after and will take days to recover, but worth it. • • • • #silentvalley #silentvalleyreservoir #kilkeel #northernireland #norniron #ireland #discoverireland #ehlersdanlossyndrome #winterwalks #winterinireland #newyears #christmas #yule</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/?utm_source=ig_embed&utm_medium=loading" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-12-30T21:52:37+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Dec 30, 2018 at 1:52pm PST</time></div>
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If you follow me on <a href="https://www.instagram.com/kittypotpie85/" target="_blank">Instagram</a> then you'll know I was quite proud to visit a site recently that has been on a list of things I wanted to complete -<a href="https://www.tripadvisor.ie/Attraction_Review-g209954-d214693-Reviews-Silent_Valley_Mountain_Park-Kilkeel_County_Down_Northern_Ireland.html" target="_blank">The Silent Valley Reservoir/ Mountain Park</a>. We walked for nearly an hour and I used only my cane. I had stories up throughout the trip on social media and took some pretty nice snaps with my DSLR.<br />
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It was tough, very tough, I could barely bend afterwards to get back into the car. But extremely glad I achieved what I wanted to; feeling quite proud.<br />
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Here's some photos of the day and a video of the aftermath, because it's really only fair to show both sides -I could make everything look pretty and shiny in my life through social media but we all know that's a load of bollox. I do myself and my conditions no justice by not representing the truth. On top of that it's harmful to any young, impressionable zebra out there (or anyone with chronic conditions) who feel like a failure for not living up to what many portray online. </div>
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I developed <a href="http://www.meresearch.org.uk/what-is-me/" target="_blank">ME/ CFS</a> after the flu a few years back. It was a scary experience and I struggle to deal with my feelings about when it was at its peak even now -In coma like states for up to 20 hours, I had no life, Bicky couldn't wake me but I can hear him trying to. I was very lucky to have a post infection version which has since subsided to only once or twice a month of the coma-like sleeps, but I dread it coming back full time, if it's very triggered again the future. Naturally I have received the flu shot every year since, without fail, and will never forget again.</div>
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I'm not qualified enough to discuss in detail the ins and outs of this extreme and very complex condition, but I should add that these "sleeps" are not in anyway well rested. My general sleep/ usual state is not well rested. So I wake up from 20 hours and feel like I have had zero. It's not good. I run on empty most of the time, but I can deal with the normal fatigue. </div>
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For big adventures like this I suggest setting aside several days if you suffer from EDS, chronic fatigue, etc. (make no plans for the preceding days). Bring plenty of water, salty snacks, all your braces in case of injury. And never alone, obviously. I should point out this is my second attempt at doing this. Feeling exhausted still but very happy. </div>
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<span style="color: #45818e;">Happy New Years everyone.</span></div>
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I hope your yule season has been merry, bright and well-fed.</div>
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Spent either with loved ones, or with yourself in complete harmony. </div>
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-21330378309419836802018-11-04T18:00:00.001+00:002018-11-04T18:11:20.575+00:00The ministry of silly walksFinished week two at the hospice. Here’s a quick update on how I’m feeling and doing...<br />
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<a href="https://www.instagram.com/p/BpVG-OjAVbV/?utm_source=ig_embed&utm_medium=loading" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
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<a href="https://www.instagram.com/p/BpVG-OjAVbV/?utm_source=ig_embed&utm_medium=loading" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">End of day two at the hospice. Very sore but going great -I’m so lucky to be here as not many EDS patients get a place on this programme. I’ve been doing physio so far but will also have occupational therapy at some stage, and tomorrow I start in the hydrotherapy pool which I’m really excited about. The staff are fantastic. This evening I had a massive pressure headache with vertigo and queasy stomach- symptoms of my Chiari Malformation. It was very bad, after a groggy nap I took painkillers. It’s such a pity there aren’t more places like this in the country for EDS patients, although in saying that if you end up here you are probably quite deconditioned. We need to ensure patients don’t get to that stage, especially when they are young. We need services in Ireland that help people like me from a young age, early intervention and diagnoses is key in not ending up in wheelchair like myself. A real, qualified consultant, a hypermobility clinic that can handle our comorbidities, qualified physiotherapists in each county. Healthcare shouldn’t be a geographical lottery and we should have the services available that prevent hypermobile people ending up here (a place patients go for rehabilitation). I’m going to try and make the most of this experience, while also educating the staff on Ehlers-Danlos syndrome at every opportunity. Luckily they are quite interested on the topic. I’ve ordered some #EDS4IRE badges and hoping to receive them in the post before the end of my stay! I’ll also bring in a printed copy of the petition next week and try get everyone to sign it -never miss a chance to spread awareness and fight for your rights 💪🏻 www.eds4ire.ie • • • #occupationaltherapy #hydrotherapy #cripplebabyblog #edsandhsd #irisheds #irishedsandhsd #ehlersdanlos #ehlersdanlossyndrome #fightlikeagirl #ehelrsdanlosawareness #physiotherapy #hypermobile #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #spoonie #chronicpain #chronicillness #disabilityrights #disabilitypride #chiari #chiarimalformation #intercranialhypertension</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/?utm_source=ig_embed&utm_medium=loading" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-10-24T20:48:23+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Oct 24, 2018 at 1:48pm PDT</time></div>
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I’m extremely lucky to be here. I don’t want to take anything for granted. I try not to make a big deal of the dislocations, I can’t do much to prevent them any way but also I don’t want on record that it’s an issue -I feel like I’m responsible for any other hypermobile patient who gets referred to here in the future. I'm extra carful not to faint or fall over or show any signs of dysautonomia. I’m getting more information recently from the community, and it’s even harder to get in here with EDS than I first thought. Some are refused by letter, not even being met with because they quote “don’t treat Ehlers-Danlos syndrome”. I feel my acceptance into here may be partly because of my hip dysplasia and damage to the joint because of that. The HSE cites this place to deny us treatment abroad under that scheme, but while they can help with the rheumatology side of things (in some cases anyway), EDS is a multi-systematic condition. Dislocating joints and weak muscles are only a part of it. But if the HSE says we can get treatment here in Ireland, we are not eligible under the treatment abroad scheme.<br />
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I was advised in the London hypermobility clinic that when I’m next denied treatment at home because of my condition, to ask for a letter. Build a case the HSE cannot deny. If you have ever been referred to here (and most EDS patients in Ireland know where "here" is) and denied a place because they can’t treat EDS, I urge you to insist on a letter saying so as I know some people are doing.<br />
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Because of this fragile system of “go there, they treat EDS”, “no we don’t treat EDS”, “yes we treat some cases of EDS”, “we have no funding for EDS” -I feel like I’m threading carefully, not wanting to rock the boat in the hope they realise they have a lot to offer our community even if only from a basic rheumatology point of view. While fully appreciating this experience too of course. The physios and OT’s are terrific and understand quite a bit about hypermobility in fairness. Sometimes the multi-systematic issues might seem confusing, but the basic care is there. Perhaps they are selling their staffs' expertise short, or perhaps they do not realise how difficult it is to find a knowledgeable physiotherapist or access occupational therapists (who can offer hand splints and advice) in some parts of the country. Being here for that alone is a huge benefit to anyone in the Irish Ehlers-Danlos community. Not to mention the hydrotherapy pool; I don’t think I could have gotten through my physio without the support the time in pool has given my joints.<br />
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Funding of course, is a massive issue. Not the staff and not the facilities. If the HSE is determined to insist time and time again that this hospice is the one place that can help us, then they need to back that statement with money. Prove it by making it real. Why not train (and I mean properly train, send them to London) and hire a consultant rheumatologist to have working out of here, seeing both outpatients and inpatients? Start building a hypermobility clinic in the one place we are supposed to go for refuge. I’ve noticed that the hospice is constantly fundraising. Imagine how much our community could help with that, if we weren’t busy fundraising to go to London and further afield for our individual care? Imagine what we could achieve by supporting services here at home.<br />
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I’m very grateful to be here. It’s been tough. The other night my body spasmed and twitched and tremoured. This is something the Baclofen helps to control, and I no longer have the big fits I had a couple of years ago. However when I increase exercise I find I have these exacerbated twitches. It’s hard to explain, and I never really found out why it happened or what it is, but it stems from my spine -like someone is squeezing it and little electric shocks fire out to the limbs. I’ve put it down to “one of those EDS things” although I feel it is a different issue entirely. I know I will never find out at this stage in my life. As you can imagine this occurring for hours, my body moving for hours, was exhausting. I had physio early the next morning and my body was in recovery mode -very stiff and still slightly twitchy. I still did my exercise although not brilliantly, and trying to explain these attacks to people who don’t understand fully understand the complexity of EDS is complicated.<br />
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But overall everything has been very helpful. Doing repetitive actions has helped me learn the movements that I couldn’t do before (I have balance and coordination problems that are also probably a comorbidity too, rather than direct EDS symptoms). I feel the exercises are working the right muscles unlike when I have done similar before. But it’s fucking sore. It always will be.<br />
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I’m delighted to be offered a third week here. I know it can only benefit me. But it saddens me that not enough of us, suffering adults because of the lack of survives in our childhood, don’t get these opportunities. As soon as I am out after next week I'll get back on the campaigning for services (posters and leaflets are needed for places like this, for one).<br />
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Here’s my adventures of last weekend (getting home to Bicky for these brief visits, my dogs and cat is great).<br />
<br />
I spent the first Saturday with the Dundalk for Change crew, first at our annual candle light vigil for Savita and then a group meeting. We have some exciting stuff coming up so make sure to check us out over at <a href="http://www.facebook.com/dundalkprochoice" target="_blank">Facebook</a>, <a href="https://www.instagram.com/dundalk4choice/" target="_blank">Instagram</a>, <a href="https://www.youtube.com/channel/UC-6gRiXhF2rupszq7Sj3UDQ" target="_blank">YouTube</a> and <a href="https://twitter.com/dundalk4choice" target="_blank">Twitter</a>.<br />
<br />
And then on Sunday I went for a drive and brief walks with Bicky.<br />
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<a href="https://www.instagram.com/p/Bpg4KTUgjdB/?utm_source=ig_embed&utm_medium=loading" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
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<a href="https://www.instagram.com/p/Bpg4KTUgjdB/?utm_source=ig_embed&utm_medium=loading" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">For Savita, for all of us... never again. This years candle vigil on her anniversary was particularly special. We will not stop celebrating her life now that the 8th is repealed -See you next year. • • • #dundalkforchange #savita #neveragain #savitahalappanavar #repealed #repealedthe8th #dundalk</a></div>
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A post shared by <a href="https://www.instagram.com/dundalk4choice/?utm_source=ig_embed&utm_medium=loading" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Dundalk For Change</a> (@dundalk4choice) on <time datetime="2018-10-29T10:29:51+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Oct 29, 2018 at 3:29am PDT</time></div>
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<a href="https://www.instagram.com/p/BpiGXrTFSvh/?utm_source=ig_embed&utm_medium=loading" style="background: #FFFFFF; line-height: 0; padding: 0 0; text-align: center; text-decoration: none; width: 100%;" target="_blank">
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<a href="https://www.instagram.com/p/BpiGXrTFSvh/?utm_source=ig_embed&utm_medium=loading" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">What else do childless weirdos do on a busy bank holiday Monday? Only go to a child’s forest park, that’s what. I’ve actually been living with gnomes in the forest the past week, not in a hospice. They appear to have locked me out though, ah lads... back to the hospice tomorrow for another week and looks like might be getting a third week too, yaaay. • • • #slievegullion #slievegullionforestpark #gnomes #ranawaywiththegnomes #gnomelife #ehlersdanlossyndrome #EDS4IRE</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/?utm_source=ig_embed&utm_medium=loading" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-10-29T21:53:15+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Oct 29, 2018 at 2:53pm PDT</time></div>
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This weekend I've mainly spent it catching up and scheduling posts for the various social media platforms that I help with, and updated the #EDS4IRE website - Make sure to check the campaign over at <a href="http://www.eds4ire.ie/">www.eds4ire.ie</a><br />
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I'm now also on <a href="http://www.facebook.com/eds4ire" target="_blank">Facebook with #EDS4IRE campaign</a>, so make sure to give it a like!<br />
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And have created a new logo also.<br />
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<a href="https://www.instagram.com/p/BpwfIVPl_HS/?utm_source=ig_embed&utm_medium=loading" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">I finally took the step of starting up social media accounts for the #EDS4IRE campaign (new logo, too), rather than use my blog pages and solely outsource to our supporters. Give us a like on Facebook - Facebook.com/eds4ire I’m feeling very lucky to have been given a third week at the hospice and will be returning tomorrow. I’ve learned so much already and I’m hopeful I can keep up the exercises in the real world. I’ve spent the weekend catching up on scheduling posts for the upcoming week for the social media pages that I help manage (@irishedsandhsd and @dundalk4choice to name a couple) and so apologies that I haven’t had a chance to respond to personal messages yet. Much appreciated though! 💕 Blog post coming up later tonight hopefully. • • • #ehlersdanlos #ehlersdanlossyndrome #hypermobility #hypermobilityspectrumdisorder @simonharristd @campaignforleo #hypermobilitydisorder #hypermobilejoints #itsourtime #raredisease #rarelydiagnosed #rarediseaseire #rarediseaseireland #chronicpain #chronicillness #ehlersdanlosawareness</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/?utm_source=ig_embed&utm_medium=loading" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-11-04T11:58:58+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Nov 4, 2018 at 3:58am PST</time></div>
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This evening (Sunday) I got in a quick walk with Louis and Emily. I used the wheelchair earlier in the day to conserve my energy and make sure hip wasn't popping too badly by the evening. The OT is focusing on energy conservation such as this. But one of the hardest elements of this condition to explain is how each day can be totally different -One day I walk like a crab, the next day I could pass as able bodied (at least for the first few minutes of my walking anyway). Some days you may notice my right foot is bent inwards as I walk, other days I drag it. It's so unpredictable.... The ministry of silly walks was actually based on my life story, ha.<br />
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-75983718220742617612018-10-23T07:38:00.004+01:002019-01-01T01:11:38.413+00:00[Video] Off to see the wizard I was lazy and did a video cause I’m in a rush. This is very poor quality with zero effort, enjoy! Also yes, I am excited about a hospital admission.<br />
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<h2 style="text-align: center;">
Kitty xXx</h2>
CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-15621724875622139672018-10-22T15:35:00.002+01:002018-10-22T16:40:14.843+01:00Health (and life) updates - October 2018Just some housekeeping and catching up! I've been super busy with various projects the last while. To read my last health update, <a href="https://www.cripplebaby.com/2018/07/health-updates-summer-2018.html?spref=fb" target="_blank">click here</a>. I've exciting news tomorrow, but all this malarkey first.<br />
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<h2>
Physio, bracing and the never ending saga of the hips </h2>
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I continued with my local physio briefly, but we have naturally reached the end of the road. Although I know she is available any time I need to contact her for advice.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRC2WYSXH3bSJ-muo3EBMa5lkNx-OMPLdF7gZGpWFyVoOtMvJscC-AYOVhfsN3F8xDzxaaW6iGSzDbaMx72c3kTowp4HVOMp0gEfITtAfJ8RK_PS2GOcAKcUDzSrhve0fm3hjPKrUZOGA/s1600/43199501_1411746695594741_952862237196812288_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRC2WYSXH3bSJ-muo3EBMa5lkNx-OMPLdF7gZGpWFyVoOtMvJscC-AYOVhfsN3F8xDzxaaW6iGSzDbaMx72c3kTowp4HVOMp0gEfITtAfJ8RK_PS2GOcAKcUDzSrhve0fm3hjPKrUZOGA/s400/43199501_1411746695594741_952862237196812288_n.jpg" width="300" /></a>I was yet again denied surgery for my hip -this time by a consultant in Beaumont. On arrival neither the locum nor the consultant had heard of Ehlers-Danlos syndrome, but of course, as always, ten minutes later (after I told them what it was), they were experts. Spouted off rubbish about how the surgeries to help preserve my hip may make me worse, due to my EDS, in that more than likely/ in most cases the surgeries are unsuccessful. No stats, no real information. This contradicts what I know from other EDS/ hip dysplasia patients who are living their life to a much higher level of mobility (hip wise, at least) than they were before. While this is all anecdotal, clearly, at least I had anecdotes. These doctors had no information. There are indeed some issues with EDS patients having surgeries -for one, we take longer to heal. Major surgeries need to take certain criteria into consideration (for say, the likes of surgery for Chairi Malformation). These were not the issues they brought up however, in fact they just rambled.<br />
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On entering the orthopaedic clinic I first met with the locom who discussed my X-ray and noted how I didn't yet have arthritis. Those of you with similar conditions will know how consultants and doctors alike hate using the word "arthritis". They think it will send patients into uncontrollable hysterics, that we will demand action. Especially women. We will become so hysterical our vaginas will fall off and we will wither and die with the shock *clutches my pearls*. At my age, with untreated hip dysplasia, I would be extremely lucky to not have some arthritis. I'm often told I have "damage", indeed apparently I have more "damage" on the healthy hip rather than the dysplastic one. Either way it's a non issue -I have much more pressing issues that the natural occurrence of arthritis! Plus I am on painkillers and medications that may be used to treat arthritis anyway, so a sub diagnoses of such I pretty irrelevant.<br />
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So the consultant enters, babbles on about why I can't have the surgeries to save my hip -We would make you worse, they aren't good surgeries, your EDS, your EDS, your EDS... When they realised both their lack of knowledge of EDS and even recalling the names of the hip surgeries were showing, the consultant decided to play another hand. "You have arthritis so can't have surgery". Wow, what a game changer, after twenty minutes of trying to work one angle lets just go with this instead. My eyes darted to the locom as I spoke, "Oh really, it's just I've been told I don't have arthritis". "Yes, you have arthritis" the consultant repeated, proud as punch with his decision to whip out the A word as it suited him. This isn't my first surgery rodeo, so while I understand that yes, bad arthritis makes a joint unsuitable for surgery, that simply is not the case here. I have quite mild arthritis/ "damage" I gather from previous X-rays, and my healthy hip is greater effected than the hip that actually needs surgery. Certainly not enough to impede any needed surgery.<br />
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Needless to say they were highly peeved at my suggestion that they could ring my London consultant, the actual expert on Ehlers-Danlos, and discuss the EDS implications of surgery with him. He had told me previously that EDS or not, I need surgery and he cannot understand what is going on. He is well aware though that certain consultants and their almighty egos would not be happy to call on another consultant for advice, but his offer for help and guidance is very sincere and he means well in the best interest of the patient. As was my passing on the message. They also did not assess my walking (I was in a wheelchair that day) to see how the hip dislocates as I move, or read over my very detailed physio report from London.<br />
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My local physio has suggested getting a referral back to Cappagh, who I was with initially, as they are an orthopaedic hospital rather than seeing an orthopaedic consultant in a regular hospital. We're planning to do so later next year. As for everything else, we are only going to London consultants in future. We're pretty done with the health services here, even the private ones are pretty appalling (I'll discuss the whole cardiologist debacle another time). Everything will be private and the UK rather than pay private here (the price difference being the flights and hotel stays). And of course, I and many others <a href="http://www.eds4ire.ie/" target="_blank">will continue fighting for a consultant</a>.<br />
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My physio applied for a knee brace for me through the HSE, which we waited months for, and unfortunately it's completely unsuitable. She knew when ordering it that it was quite sport like, and probably wouldn't help the knee from over extended and dislocating. She ordered it anyway and we tried it and it in no way helped. It just hindered normal movement and didn't prevent dislocations. Apparently in Louth they only have two companies to order from, and there just isn't anything suitable. She's hoping that the Dublin hospitals have a better catalogue and can order something. I'm getting fed up of this. I finally found a good shoulder brace online (for a less than great 80 quid, before postage) but I'm planning to buy it soon -Just hope the sizing is correct. Price of all these braces aside, it's really difficult to try and understand the sizing when you have nothing to compare it to. They are also rarer than you might think, I've been in mobility aid shops and they just respond "oh no we wouldn't have anything like that, you would need to see an OT". They are vital though to prevent dislocations and further damage, and I should have had these a long time ago. If I hear nothing soon from anyone in Dublin I'll search again for an appropriate, non sport one online.<br />
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<h2>
Pain Management</h2>
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Nearly three years of waiting and I finally met with a pain consultant. This appointment was far more refreshing! Both the locom and consultant were quite versed on EDS and Chiari Malformation. The consultant suggested two types of injection into by back -trigger injections into the muscles, and nerve blockers that would travel up into the neck. The hope was the trigger injections would calm the hardened, damaged muscles and that the nerve blocker would help with Chiari symptoms. They don't work on everyone, so I was aware of this going in as well as the possible complications. Couple of weeks later I was booked in for this day procedure. I was surprised at how much they helped, although both are obviously only temporary. Hopefully I will get another appointment soon, although I'm yet to hear (I think they are meant to be every 6 weeks apart). I have a follow up appointment with the pain clinic in a few months, but I'm hoping to have more injections before then as planned.<br />
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<h2>
Dundalk For Change</h2>
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Many of you may remember my canvassing to repeal the 8th amendment here locally in Dundalk, with our group Dundalk for Choice/ Dundalk Together For Yes. Since the referendum we have transformed to <a href="https://www.facebook.com/dundalkprochoice/" target="_blank">Dundalk for Change</a> to fight for new issues and injustices, including tackling the housing crisis and ending direct provision. Yesterday we held our first AGM and I'm excited to say I'm now elected as Social Media Officer and will be working with a great bunch of people (we have been working together for ages, but now it's officially official).<br />
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The turnout was fantastic, and I think we will have a lot of new members joining our ranks over the next couple of weeks.<br />
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<h2>
Irish EDS & HSD</h2>
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And of course I have also been busy with <a href="https://www.facebook.com/IrishEDSandHSD/" target="_blank">Irish EDS & HSD</a> committee work. We attended the Still Waiting's Campaign national health demonstration recently, with our shiny new banner, and were very pleased with the coverage we received on the news, print and radio (I think my newly spray painted pink wheelchair helped!). I've still so much work I want to do on this, and now that we have the banner already I want to get the use of it. Protests, gatherings, awareness pieces... I'm also hoping of course that any work I do for one committee can help the other. Part of our objectives with DfC is to bring about changes within the HSE -The waiting lists, trolley crisis, lack of GP's, lack of consultants.... I've some work to do tonight and then after that I won't be around for the next couple of weeks... Will update on that info tomorrow.<br />
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Oh and if you haven't already, sign the petition and check out my website:<br />
<a href="http://www.eds4ire.ie/">www.eds4ire.ie</a><br />
<b><span style="font-size: large;">#EDS4IRE</span></b><br />
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<h2>
Blog Awards Ireland</h2>
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Unfortunately I can't attend the <a href="https://www.facebook.com/blogawardsireland/" target="_blank">Blog Awards Ireland</a> this year on October 25th, but I'm honoured to be a finalist for my blog piece <a href="https://www.cripplebaby.com/2018/03/in-my-shoes.html" target="_blank">In My Shoes</a>!<br />
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Really wish I could attend, the theme this year looks fantastic.<br />
But I'll be away... As I said, more on that tomorrow 😉<br />
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-56222071789577336582018-07-21T23:56:00.003+01:002018-07-22T04:09:45.126+01:00The complex story of loving someone with mental illness<div class="separator" style="clear: both; text-align: center;">
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<a name='more'></a>My dad was a big man. Larger than our lives.<br />
Liked to dress sharply, enjoyed the finer things. But also the small.<br />
Loyal to a fault.<br />
Loudly Scouse.<br />
"Sound as a pound".<br />
A man of routine and family, appreciated hard work -in himself and in others.<br />
Known for his kindness, generosity and forgiving nature.<br />
Temperamental and passionate.<br />
Hurt. He always seemed so very hurt. Saddened by the past.<br />
He loved animals, yet worked in an industry that killed some.<br />
His spelling was atrocious, and his hair was always filthy with large pieces of dirt from the factories.<br />
My childhood is filled with images of him eating giant slices of water melon and even bigger steaks, sitting with my sister each side of him on his armchair. Grooming his hair like little monkeys. Giggling.<br />
Later, he ate very little.<br />
He drank like a fish. Not unusual in those days. It wasn't really seen as an issue until much later.<br />
He liked whiskey and vodka and beer and Irish coffee.<br />
He enjoyed all things Irish.<br />
Storytelling and reminiscing.<br />
His memory failed him more times than I can count.<br />
It turned his mind into a battleground where the ones he loved the most were enemies.<br />
Paranoid and stubborn.<br />
Obnoxious and controlling.<br />
But always very sad, and forgetful.<br />
He was plagued by both the things he could remember and the things he couldn't.<br />
Yet he could meet a stranger and be the nicest person in the world, take them under his wing, give them anything they needed. He could feel like a king. Surprise us all with treats.<br />
Weekend fries. Jam butties. Chucky eggs and soldiers.<br />
No one was allowed into the kitchen when the king was cooking.<br />
Dinner in Muldoons.<br />
Ice cream in Finlay's.<br />
Toys home from countries he visited for work.<br />
Sitting in the front room listening to opera.<br />
He smoked like a train.<br />
His anger could be immense, sudden. He could be cruel and vicious with his tongue. Jekyll and Hyde. It was hard to separate the two; love one and hate the other.<br />
Violent at times, break things, physical.<br />
Confusion and destruction.<br />
Spiteful.<br />
But his mind was not his own -drowning in demons. Broken. This wasn't who he was meant to be. It's hard to mourn those that are still breathing yet here we were.<br />
Ageing meant he couldn't hurt us anymore, too weak to fight. We could forget the other years and concentrate on the now. But he was still wholly fractured in his thoughts. Plagued with regret and remorse from times he could barely recollect. Perhaps that's no excuse though.<br />
Those he hurt are still allowed to remember with truth and feel that something was taken away.<br />
No matter what, the monsters on his shoulder were a part of him.<br />
A victim as well as an enforcer.<br />
He enjoyed drives out to the airport so we could watch the planes taking off.<br />
He hated seeing me in physical pain, often frustrated with the doctors.<br />
And he always had a pound coin for every newly born baby he met. He was a man of traditions.<br />
Reading stories from old Twinkle and Bunty annuals before bed, torn edges and scribbles all the way through. I loved them anyway because he did.<br />
Barbecues and paddling pool, summer days in the garden.<br />
Playing on the avenue, waiting for him to come home from work.<br />
Nothing was ever simple with the big man. But we loved him, monsters and all.<br />
And we mourned him before his time, for the person he should have been.<br />
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-38355342248388664382018-07-20T23:50:00.001+01:002018-07-21T00:31:17.306+01:00The one where they got secretly married (nay neH)<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #b45f06;">Yes, yes... nay neH is "Just Married" in Klingon</span></td></tr>
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<br />
So I've briefly mentioned this in a couple of my last posts and I'm sure some of you were like, wait what, did she just swipe over all that gossip of eloping? Like some kind of celebrity. And yes, yes I did.<br />
<br />
But now I'll get all basic bitch and gush about my wedding day for those who want to know the full story -so if you're uninterested look away now.<br />
<br />
<h2>
The planning</h2>
<br />
We're both (myself and Bicky) quite practical people. Laid back, too. Bicky works in the wedding industry so sees his fair share of nuptials. While they're all wonderful celebrations for the happy couple and their families, it's just another, average work day for him. I've never had this childhood fantasy of a fairytale wedding day with a huge white dress, cake... None of that stuff. We're both also (super duper califragilistic) atheists, so a church was never going to happen either.<br />
<br />
With all that in mind, and not wanting a big party or fuss or such, I always assumed if we were to bother getting married that we just wouldn't tell anyone. Perhaps, not at all. People might find out way into the future, if one of us was in hospital for example, but I would be content in never mentioning it otherwise.<br />
<br />
After a brief discussion last winter (2017) we decided to get married in secret (but to tell people afterwards, as we kinda wanted to wear rings). That was it really. All very practical conversations.<br />
<br />
<ul>
<li>We applied to give our three months notice of intent to marry on March 5th, 2018. </li>
<li>Picked a registry office that was open the day we wished to wed.</li>
<li>Booked a hotel in to stay that night, the stunning <a href="https://www.farnhamestate.ie/" target="_blank">Farnham Estate</a>. </li>
<li>And then a house in Achill for the week for our honeymoon (we just told people we were off on holidays to Achill).</li>
</ul>
<a name='more'></a><br />
We had to decide on two people for witnesses. As we didn't want to pick two that we knew, to be fair we decided to hire photographers and ask them them to double as our guests. Perfect. Bicky had met <a href="https://www.facebook.com/MilcaGPhotography/" target="_blank">Milca</a> and <a href="https://www.facebook.com/AndyWilsonPhotography/" target="_blank">Andy</a> of <a href="http://mianphotography.com/" target="_blank">Mian Photography</a> through previous weddings they worked at, and we loved their photography on their <a href="https://www.facebook.com/PhotographyMIAN/" target="_blank">Facebook page</a>.<br />
<br />
I picked a simple, gold Cladaggh ring with green, Connemara marble heart centre in Galway. Bicky chose a titanium ring with almost tree-like, rings etched around it, from a shop/ workshop in Dublin which creates each ring to order. We were too laid back with this part though and they had to put in a rush for us, but they we confident they would have it ready to pick up the weekend before our wedding.<br />
<br />
I ordered a grey-blue lace dress with a bird design fromt <a href="https://www.next.ie/en" target="_blank">Next</a> and a flower crown from <a href="https://www.etsy.com/ie/shop/FloraAndTheFox" target="_blank">Flora and the Fox</a> on Etsy. My shoes were red Mary-Jane style with thick, chunky platform heals for comfort, purchased from <a href="https://www.schuh.ie/" target="_blank">Schuh</a>.<br />
<br />
Bicky wore a pare of chinos he already owned (bought him a heap of new ones for Christmas!) and a waistcoat, which he already owned. Yep. That was about the height of it. We did look for a new waistcoat but they were all horrendous and looked riciuloclus. So he stuck with the one he knew looked nice on him. And oh almost forgot -a teddy bear tie. It was a tie I had bought my (now deceased) dad when I was a kid, so it was nice having that as part of the day... Even though no one else there, symbolically or otherwise! Ha.<br />
<br />
<h2>
The <strike>big</strike> small day</h2>
<br />
Who remembers the snow blizzards of April/ March? Yeah, they were fun. Not. For those of you were/ aren't in the country, we had terrible blizzards unlike what we usually would have in Ireland. The type of snow was different -un-melting, hard rocks, and the wind caused snow drift to the point that it piled itself high along roadways. Where we live wasn't too bad -the main town roads were gritted and driving, while hazardous at times, wasn't always impossible. Other towns, particularly villages, had it worse and the gritters just weren't getting out there.<br />
<br />
Some businesses had to close. Including the shop where Simon was due to pick his ring up. We're laid back, so that was fine, no biggie -we had a ring he could use for the day and we could just pick up his real one later.<br />
<br />
Then the post was effected. That's to be expected with bad weather. So I was pretty positive I wouldn't receive my flower crown on time. Ok, well, these things happen. It's a shame, but I can make do without.<br />
<br />
We were a bit anxious about driving to Achill Island (we're not exactly near it, and the roads aren't great in a lot of places), but the weather was set to ease off a little.<br />
<br />
Our photographers/ witnesses were more trapped in then we were but eventually heard that things were thawing a bit their end, so we were hopeful.<br />
<br />
Then came the news from the registrar. She rang the Friday before the Monday we were due to get married. Explained to Bicky that hopefully they will be open, if not we would obviously had to rearrange. She said she would ring us Sunday evening with an answer when they knew if the weather was going to let up. This was possibly the worst news yet, but we were confident the weather would be ok as it was meant to pick up by then.<br />
<br />
Sunday came and no word form the registrar. We tried to ring the mobile number she gave us and it went straight to voicemail. Then of course, the photographers/ witnesses van was refusing to start.<br />
<br />
All sorted in the end! The van was fixed, the registrar opened, my flower crown showed up ten minutes before we left for the house, and the snow even thawed at <a href="https://www.farnhamestate.ie/" target="_blank">Farnham Estate</a> where we were having the photos taken. It's amazing, like we had <i>so little</i> to actually organising and everything nearly fell apart. I don't envy those organising actual weddings!<br />
<br />
Here's some of those beautiful photos from <a href="http://mianphotography.com/" target="_blank">Mian Photography</a>.<br />
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Thank you so much to <a href="http://mianphotography.com/" target="_blank">Milca and Andy</a>. And to the <a href="https://www.farnhamestate.ie/" target="_blank">Farnham Estate hotel </a>who upgraded us to a fantastic, massive room once they heard it was our wedding night, and of course for letting us take photos on their grounds. Also, thank you to those who gave cards and presents even though we expressed it wasn't at all necessary! Hence the eloping, lol. Thanks everyone xxx<br />
<br />
For all the craic on our honeymoon, <a href="http://www.cripplebaby.com/2018/03/in-search-of-achill-henge.html" target="_blank">check out my previous post</a>.<br />
<br />
Also take a look at our <strike>masterpiece</strike> <strike>video</strike> thing below -In Search of Achill Henge.<br />
<br />
Oh and FYI, I didn't feel the need to take his name. I have my own already 😉<br />
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com1tag:blogger.com,1999:blog-609706155970920065.post-84770936547071284532018-07-06T03:08:00.001+01:002018-07-06T03:23:34.218+01:00Health updates - Summer 2018And now for all the boring stuff. I'll keep it all as brief as possible!<br />
<br />
Here's what's been happening since <a href="http://www.cripplebaby.com/2018/02/health-update-upright-mri-2018.html" target="_blank">my trip to London</a>...<br />
<br />
<h2>
The experiment </h2>
On the advice of the London physio, my own little miracle worker decided to try and unlock my thoracic spine (which we believe has been locked since childhood). As this being locked is causing immense pressure and strain on my c spine (meaning that my head has less support and the neck is struggling to keep it upright daily as the c spine is doing so alone), unlocking it would help bring about some strength and stability. Maybe even decrease the neck dislocations.<br />
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<br />
She explained to me how this slow process would go. I would lie down on my front and she would gently touch along my t spine, encouraging the vertebrae to open slightly. There are apparently four stages to this process, although with my issues she was reluctant to even suggest that we get to stage three. She was hesitant, as she has never attempted this on a patient who dislocates/ has EDS, but as I was keen and London agreed it was the best option for me, she was willing to go ahead with the treatment.<br />
<br />
We would start at stage one and build up, I would see her one a week to try and progress to the next level. It was somewhat experimental, and neither of us could predict the outcome. Firstly because, well, everyone is different, and secondly because she has never performed this treatment on anyone with complex issues. I could sense her fear, so I really appreciated her agreeing to proceed.<br />
<br />
I lay down and she gently touched along my mid spine -tiny, little nudges. Not even taps. Muscles that hadn't been activated in years began to spasm as the vertebras were moved. Odd twinges along my sides, radiating from the spine. It was a strange feeling but not unpleasant. The movements were so tiny yet so powerful. I left that day with an appointment for the following week.<br />
<br />
<h2>
Unexpected side effects of the bizarre kind</h2>
Within minutes of leaving the clinic my gag reflex went into overdrive. I started making the strangest sounds as my body lunged forward, violently spasming along my diaphragm. It wasn't painful, but was annoying, and uncontrollable. As well as hilarious. I sounded ridiculous. Something almost goat-like. Bicky was in stitches. This was a very unexpected side effect from what seemed like a simple manipulation of my spine.<br />
<br />
<a name='more'></a>The gagging lasted about two days, calming down by day three. By then pain had really kicked in. My usual vestibular issues has intensified including fullness in the ears and loud ringing/ waves/ etc. (even with medication). My neck felt crushed as my head felt so heavy. My muscle spasms and rigidity intensified (again, I was taking the medications that usually control these symptoms). It was very disorientating. I felt all kinds of wrong. By the time the week was up, it had settled down... Anyone who sufferers with intense chronic pain will tell you -when the good days come, you can almost (almost) forget how bad things were. This makes it really hard to explain to doctors and acquaintances. We accidentally play it down. Our minds protect ourselves from the trauma, and we often don't remember it as bad as it was. I spoke with the physio and told her what had happened. She was concerned, but I insisted we continue. I figured my body would get used to it and it was natural. After all, it had been locked in this position for decades.<br />
<br />
So she did another manipulation, but stayed on "stage 1". She was cautiously keeping things slowly and not progressing to the second stage as planned.<br />
<br />
Week two symptoms were even more intense, although occurred in the same way. Immediately gagging, wrenching. Pain. Intensified symptoms.<br />
<br />
But this was worse. So much worse. My unexplainable eye blindness (in my left eye usually) came on suddenly, and stayed for longer than usual. Two days this time. I had guessed before that back pain had brought it on, but I didn't understand the correlation (and still don't). So this confirmed for me that the issue is partly due to something happening in my thoracic spine (I also have issues with dry eyes and a small cataract, but this blindness is different -comes on suddenly).<br />
<br />
Doctors who know about EDS are few and far between, and non existent in Louth. We have no A&E in Dundalk, so the nearest hospital is Lourdes in Drogheda. EDS does not exist there. There's no point in going. Beumount has been advised in the past and I don't mind the extra travel at all, but again, EDS really doesn't exist in this country. There's very little they can do, Google can only advise them so much. Yes, Google. I have been in this situation before. I honestly don't mind though -I'd rather a doctor be honest and admit they do not know the condition, rather than the giant egos we are often met with. But there is very little point in going to an Irish hospital, particularly here. But I have never wished so badly for a doctor in my life; some form of reassurance and healthcare.<br />
<br />
<h2>
Not wanting to go permanently blind</h2>
I sadly had to admit defeat. Even if I could convince my physio to continue, I'm not happy putting her in that position. I was honest with her on our next appointment, told her fully the extent of the side effects this time (it was quite traumatic and there was no forgetting it). She was concerned and of course said she could not continue. We don't know why I was reacting like this, but it's best to keep the thoracic spine locked.<br />
<br />
I continue to do small exercises that do help move it a bit (although not permanently I gather). One method involves Bicky rolling a tennis ball along each side of the spine each night. It actually feels really nice and doesn't cause as extreme reactions (we are careful to not roll over the actual spine itself).<br />
<br />
The physio has ordered me a couple of braces to use when I'm dislocating badly and need some relief, one for my knee which is badly needed. So I look forward to that.<br />
<br />
Ehlers-Danlos syndrome continuously amazes me, freaks me out, and has me and my doctors/ specialists shrugging our shoulders and laughing nervously. It's the gift that keeps on giving!<br />
<br />
<h2>
Other house-keeping</h2>
As it's summer I'm having a hell of a time with <a href="https://en.wikipedia.org/wiki/Dysautonomia" target="_blank">dysautonomia</a> from the heat, it's a massive trigger for me. Feeling faint and such. Hopefully I'll have some treatment soon from cardiologist, if not I'm looking into a sports helmet to wear around the house. I banged my head so often last summer, I'm really shocked that I don't have permanent damage.<br />
<br />
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<br />
In between all this silliness I was involved with <a href="https://www.facebook.com/dundalkprochoice/" target="_blank">Dundalk for Choice</a> (previously Dundalk Together for Yes, previously previously Dundalk for Choice) in canvassing to <a href="http://www.cripplebaby.com/2017/08/more-than-just-abortion-more-than-pro.html" target="_blank">repeal the shitty 8th amendment</a>.<br />
<br />
On May 25th, the battle was won. It was a beautiful few months, an <a href="http://www.cripplebaby.com/2018/03/in-my-shoes.html" target="_blank">emotional</a> and heartbreaking experience, as eye-opening as the <a href="https://www.irishtimes.com/news/politics/ireland-becomes-first-country-to-approve-same-sex-marriage-by-popular-vote-1.2223646" target="_blank">marriage referendum three years ago</a>.
<br />
<br />
#thenorthisnext<br />
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<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/Bi-M5Q8AkAl/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/Bi-M5Q8AkAl/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">A truly beautiful day, with truly beautiful people 💗 #together4yes</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-05-19T20:09:14+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 19, 2018 at 1:09pm PDT</time></div>
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<a href="https://www.instagram.com/p/BjFnkqmAGAu/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">3 DAYS TO GO. "We were born into an unjust system -we are not prepared to grow old in it". • #bernadettedevlin #bernadettedevlinmcaliskey #repealthe8th #together4yes #dundalktogetherforyes #dundalktogether4yes #humanrights #irishartist #doodle</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-05-22T17:17:02+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 22, 2018 at 10:17am PDT</time></div>
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<a href="https://www.instagram.com/p/BjPU2qAAuVj/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">The amount of crying I've done over the last few days, weeks, and since hearing the amazing exit polls, not one drop. Maybe I'm too exhausted, maybe I don't want to believe it yet. Every one one of those tears were important though. They were for the stories I've read and heard, they were for the frustration and the joy. Canvassing was fucking tough and after the marriage referendum I didn't think I could do it again. But I'm glad I did. I've became closer with old friends while meeting so many new, vibrant, brilliant people. It's rare that I'm proud of Dundalk, proud of Ireland, but we are a people when we want change it becomes an active demonstration and I will always love that. We're fucking deadly, lads. To those saying "I knew it would be a yes" -Fuck you. It was by no means a yes all the way through, it fucking wasn't. Don't belittle the last year of peoples lives to that sentence. Enjoy today, enjoy tonight, no matter what you voted be around friends and don't pace alone at home with your feelings and raw emotions. Because no matter what you have heard throughout this campaign -mental health IS health. If you are in need of free and confidential counselling, please contact SOSAD Dundalk - 042 9327311 • • •
#Landslide #Together4Yes #DundalkTogether4Yes #RepealThe8th #Ref2018 #ireland #dundalk4choice #dundalkforchoice @dundalktogether4yes</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-05-27T10:58:37+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 27, 2018 at 3:58am PDT</time></div>
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<a href="https://www.instagram.com/p/Bjixat5A0nn/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">"How did you spend your Saturday night?" It was most definitely not spent making a referendum/ canvassing memory box and crying listening to Florence and The Machine 🙄😭😂 Sake. • • • #together4yes #dundalk4choice #dundalkforchoice #dundalktogether4yes #dundalktogetherforyes #thebestoftimestheworstoftimes #newfriendsoldfriends #repealthe8th #repealedthe8th #abortionrightscampaign #abortionrightsireland #womensrights #inhershoes</a></div>
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<br />
I'm feeling particularly cocky and hopeful for the future of Ireland -from a shrill, feminist POV. Seriously, come at me with your ableist nonsense, your eye-rolly mansplaining of the whole process of the referendum, your ignorant "what's the point in protesting anything" bullshit, your general crap ideology, telling a woman, a human, how to act, how to be, how we should just accept the way things are, how we should calm down.<br />
<br />
Come. At. Me.<br />
-I bite now.<br />
<br />
...<br />
Oh yeah, and I got married in March. Secretly.<br />
<br />
But we'll catch-up on that in my next post! I'm too busy being shrill and fabulous right now.<br />
(and no, no I did not take his name).<br />
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<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/BkClH1DgZQY/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BkClH1DgZQY/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">A few photos from our secret wedding back in March. Photos by @mianphotography.training (who were also our witnesses!). Ceremony was a simple, quick swing by registry office and then photos taken at @farnhamestate. We had so little to plan and it almost all fell apart at the last minute 😂 Luckily the snow storms subsided and everything came together. I’ll write a blog post about it all over the weekend. 🎀 🎀 🎀 #wedding #secretwedding #farnhamestate #buckfast #mianphotography #flowercrown #hubby #carer #casualwedding #smallwedding #elope #eloped #ireland #teddybearspicnic #forest</a></div>
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<script async="" defer="" src="//www.instagram.com/embed.js"></script>CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-86070296957893807842018-07-01T21:03:00.002+01:002018-07-23T22:14:55.353+01:00Ehlers-Danlos Syndrome: A message to the newly diagnosed<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; background-color: white; font-family: Georgia; font-size: 16px; font-stretch: normal; line-height: normal;">
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<span style="font-kerning: none;">I first wrote this piece for <a href="https://www.facebook.com/IrishEDSandHSD/"><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(0, 0, 238); color: #551a8b;">Irish EDS & HSD</span></a> as part of EDS awareness month in May, and thought I would share it here too. See the original article here:</span><br />
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<span style="font-kerning: none;">If you are newly diagnosed, hope you find it helpful. </span></div>
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<span style="font-kerning: none;">And if you do have either EDS or HSD and would like to write something for the Irish EDS & HSD page, please get in touch through <a href="http://www.facebook.com/irishedsandhsd" target="_blank">IM'ing the Facebook page</a>!</span></div>
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<span style="font-kerning: none;">________________________________________</span></div>
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<span style="font-kerning: none;">For anyone that has been newly diagnosed with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, I know you must be feeling a mix of emotions -afraid of what the future holds, but also relieved that this long mystery has finally been resolved. Like many sufferers, like in my case, you may have waited years for this part of the puzzle to be answered. Now you’re faced with even more questions, and you may come to realise that there isn’t a lot of medical help in Ireland. This makes the future even more daunting than it was before.</span></div>
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<span style="font-kerning: none;">You could be wondering what was the point in fighting for a diagnoses all this time, what was the point if there is no cure and you’re surrounded by specialists who tell you they are not qualified, ask you to spell the condition, or are just very dismissive in general. </span></div>
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<span style="font-kerning: none;">I know you’re tired, but I promise things get better. Here’s how I have coped the last few years since my diagnoses:</span></div>
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<b><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(29, 33, 41); color: #1d2129;">1. </span><span style="font-kerning: none;">Find online support groups.</span></b></div>
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<span style="font-kerning: none;">There are two Irish groups and also one for parents of children who have been effected by EDS and HSD. There are also tonnes of UK and international ones, but Irish patients understand your battle even more so than anyone else. They’re not only great places for general support, but also for finding various specialists who know about your condition. Even if you rarely post in these groups, it’s nice to know you are not alone. </span></div>
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<b><span style="-webkit-font-kerning: none; -webkit-text-stroke-color: rgb(29, 33, 41); color: #1d2129;">2. </span><span style="-webkit-font-kerning: none;">Find a (at least some-what) qualified physiotherapist and a good GP.</span></b></div>
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<span style="font-kerning: none;">Easier said than done, right? This will very much depend on where you live, as Ireland can be a bit of a post code lottery when it comes to healthcare. I spent years looking for a physiotherapist who was confident enough to keep me on, one that had even heard of Ehlers-Danlos Syndrome, who knew about joint hypermobility, who I didn’t scare the absolute bejesus out of. Even before my diagnoses all I heard was, “I’m sorry, you’re too deconditioned for my expertise”, “You need a rehabilitation programme as an in-patient”, and so on. It was very frustrating, as they were apologetic but couldn’t offer me help or even point me the direction of where to get help. I’ve lost count of how many physiotherapists I was forwarded on to over a period of ten years. I eventually found one willing to take my case and she has been so helpful with appropriate excises, encouragement and accessing things like braces and aids. Don’t lose hope and please keep fighting. A physiotherapist who knows about hypermobile joints will help you the most through all of this. </span></div>
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<span style="font-kerning: none;">I was lucky enough to accidentally find a GP who is truly wonderful. Who will take a risk, ask colleagues for advice; who is actually interested in my condition and my well-being. Waiting lists can take years, and in between all those wait times you may need medications and advice as to not become even more deconditioned. A good GP and physiotherapist will become your main health care providers. If your GP is not willing to adapt, consider changing to a new one if at all an option where you live.</span></div>
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<span style="font-kerning: none;">Talk to friends, keep a diary, write a blog… anything that helps you release any pent-up anger. Allow yourself to cry. It’s been a long diagnoses journey and you thought the end was in sight, only to realise it was only the beginning. You are allowed feel frustrated, upset, confused. Let yourself breath and acknowledge those feelings. You don’t have to be positive all of the time. If you are really struggling and the support groups aren’t enough, consider counselling. </span></div>
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Don’t be so hard on yourself.</div>
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-2074535367553702022018-04-05T16:02:00.002+01:002018-04-05T16:49:53.553+01:00Repeal - A film review<a href="http://www.cripplebaby.com/search/label/Repeal%20the%208th" target="_blank">As a proud Repealer</a> I was very excited to hear about <a href="https://www.facebook.com/repealshortfilm/" target="_blank">a new short film on the issue</a>, written and directed by <a href="http://www.imdb.com/name/nm8747480/" target="_blank">Karl Callan</a> with the aim of showing his audience the faces behind <a href="https://www.repealeight.ie/background-to-eighth-amendment/" target="_blank">the 8th amendment</a>.<br />
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Three stories, from three Irish women, depicted in poignant scenes by actors <a href="http://www.imdb.com/name/nm2258085/?ref_=tt_cl_t2" target="_blank">Maureen O'Connell</a>, <a href="http://www.imdb.com/name/nm1890257/?ref_=tt_cl_t1" target="_blank">Lynette Callaghan</a>, <a href="http://www.imdb.com/name/nm6103543/?ref_=tt_cl_t7" target="_blank">Aidan O'Sullivan</a>, <a href="http://www.imdb.com/name/nm8210173/?ref_=tt_cl_t4" target="_blank">Michael O'Kelly</a>, <a href="http://www.imdb.com/name/nm9547279/?ref_=tt_cl_t8" target="_blank">Niamh Walsh</a>, <a href="http://www.imdb.com/name/nm5511531/?ref_=tt_cl_t3" target="_blank">Rebecca Thompson</a>, <a href="http://www.imdb.com/name/nm7516884/?ref_=tt_cl_t5" target="_blank">Maria Fiorentini</a>, <a href="http://www.imdb.com/name/nm8914754/?ref_=tt_cl_t9" target="_blank">Patrick Bokin</a>, <a href="http://www.imdb.com/name/nm7250091/?ref_=tt_cl_t10" target="_blank">Conor Waldron</a> and <a href="http://www.imdb.com/name/nm7752993/?ref_=tt_cl_t6" target="_blank">Sofia Bwcka</a>.<br />
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For those who have been out canvassing, handing out leaflets, engaging in those everyday discussions on the subject, you'll know that real testimonies about how <a href="https://www.repealeight.ie/background-to-eighth-amendment/" target="_blank">the 8th</a> effects women and sometimes families, has a far greater impact that opinions and sometimes facts alone. Putting ourselves into <a href="https://www.facebook.com/RepealTheEighth/" target="_blank">their shoes</a> can be difficult, but seeing and hearing situations from those who have lived them is a step in the right direction. It's a step towards helping those on the fence, those soft yeses and those soft no's, make a responsible voting decision on May 25th this year.<br />
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<span style="color: white; font-size: x-large;"><i style="font-family: "Courier New", Courier, monospace;">"I researched the stories, spoke with women I know who had been through</i> <i style="font-family: "Courier New", Courier, monospace;">similar situations. I also spoke to</i> <i style="font-family: "Courier New", Courier, monospace;">medical professionals and learned of the </i><i style="font-family: "Courier New", Courier, monospace;">difficulties they go through as a result</i> <i style="font-family: "Courier New", Courier, monospace;">of the restrictions put on them.</i><i style="font-family: "Courier New", Courier, monospace;">I wanted to make sure the film was as realistic as possible"</i><i style="font-family: "Courier New", Courier, monospace;"></i></span><br />
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The feature opens up with the story of Samiya. After a dramatic beginning we quickly change to the scene of Emily, abortion from another point of view. We know immediately these scenarios, before the scenes even really come in to focus. Cut to later in her story, a stark change in circumstances, another dramatic and poignant segment.<br />
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Be pre-warned for serious content warning throughout. I realise you may already know this if you are aware of the theme of the film, but there really is no holds barred.<br />
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The story switches again, back and forth in short clips -showing the stark contrast in various situations women in Ireland find themselves in. Reneé is next, yet again a different side of the 8th amendment in use.<br />
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Unlike other films, it's not easy to get lost and forget these are real stories. I have to say that I'm rarely impressed with Irish actors or Irish productions (soz, RTÉ). Like many, I find a good chunk of Irish TV cringe, to say the least. So I was very inspired with the portrayals in this short feature. At only just over twelve minutes long, the director has managed to capture the true issues at play with the 8th amendment in a passionate but realistic manner. There's no overacting, but also no holding back. It's simply real experiences laid bare in all their gritty truth. Absolutely in love with the music too, by <a href="https://www.facebook.com/pg/steviedarraghmusic" target="_blank">Stevie Darragh</a> of <a href="https://www.facebook.com/overheadthealbatross/" target="_blank">Overhead, the Albatross</a> fame.<br />
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I wanted to give a true opinion on this film, not that my expertise in such creative arts is of anything of well, any standard or experience! But as a film with a topic that I hold dear to me, a campaign that I view with as the highest order and utmost urgency in Irish society today, I wanted to be able to call attention to this film. Even in some small way. At the same time, I wanted to be objective on all it's elements, both factual and artistic. I wanted to come away with even one criticism, not watch it blindly simply because I was in agreement with its message. Even if that one thing was simply going to be that it was such a brilliant piece of work, that it should be extended further to a short film. But the truth is, it encapsulates everything it needs to in those twelve minutes and I wouldn't even change that.<br />
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I couldn't fault a thing, and people need to watch it. Tomorrow is the big day, <a href="https://www.facebook.com/repealshortfilm/" target="_blank">so keep an eye on their Facebook</a>. Make sure to like/ follow their social media and most importantly watch and share so others can experience. You don't know who on your friends' list is listening in, wondering how they will use their vote.<br />
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If watching this short piece doesn't convince you to get involved in some way, canvass if possible, I'm not sure what will. If you want to take part in the yes campaign in Dundalk (or surrounding areas such as Blackrock -even Ardee) then please get in touch with us at <a href="http://www.facebook.com/dundalkprochoice" target="_blank">Dundalk 4 Choice -Together for Yes</a>. We need as many people as possible for canvassing.<br />
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Many have their reservations, beginning to canvas is no easy task. It's putting yourself out there in a way you are not used to. But you will never be out there alone, you will be among like-minded comrades who can offer you advice and support. You won't be asked to knock on any door without a canvassing friend beside you. And honestly, most people who answer those doors are courteous and respectful, no matter what their views... If you are even considering that you might be up for the challenge, <a href="http://www.facebook.com/dundalkprochoice" target="_blank">do make contact on Facebook</a>. We would love to hear from you. If you really can't bring yourself to do it, then like and follow our page and make sure to share our events and posts. Talk to friends and family about how they plan to vote on May 25th, be open minded and listen to their qualms. Show them Facebook pages such as <a href="https://www.facebook.com/RepealTheEighth/" target="_blank">In Her Shoes</a>. Every little bit counts.<br />
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<br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-40099238700032625452018-03-26T19:26:00.000+01:002018-03-26T19:26:01.679+01:00In search of Achill-Henge<img border="0" data-original-height="1064" data-original-width="1600" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7aSHp3U8WsazxO8J4XBHVTU3ZBq6jZ7_2yIpMghDksKSCOLLPHD6QEj6-stlPtwIYGz967MBA6imzP2KopjEpXvlCAFL4K613lRglhf6DD9p1SLZHIb_AO8MTPV8FDjryTaFPq_712mU/s640/DSC_0749.JPG" style="text-align: center;" width="640" /><br />
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On March 5th, me and my beloved Bicky totally eloped, telling no one at all, and went and gots hitched. Yup. We hired two photographers who worked as our witnesses! That way we didn't have to tell only two loved ones, and try and choose between them all. It was beautiful, laid back and totally the no fuss day that we wanted. But more on all that later. If you're feeling particularly sound then give the photographers/ witnesses a like on Facebook - <a href="https://www.facebook.com/PhotographyMIAN/" target="_blank">Mian Photography and Training</a> - I really could not recommend them enough, whether it's your wedding, family/ baby pics you're looking for, or even fur-baby photo-shoots (some very cute ones on there, if for nothing else you should like the page for the cuteness). Very talented pair!<br />
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But more on the wedding stuff later (promise). This post is about our honeymoon (we told everyone we were just going on holidays) to Achill Island (apparently we're 50 and it's 1982). We've been before and loved it -the sheep, the silence, the natural beauty from mountains to the sea to breath taking empty and vast landscapes, the sheep again. Loads of craic, <a href="https://www.buckfast.com/" target="_blank">bucky</a> and snaps and videos were had.<br /><br />
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A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-03-08T18:32:22+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 8, 2018 at 10:32am PST</time></div>
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<a href="https://www.instagram.com/p/BgExPs9hgGG/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">• Dooagh beach... This beach just reappeared last summer! Before that it was just stones for a long time. A gift from the sea • . . . . . . . . . . . . . . . . . . . . . . . . . . . . . #dooagh #dooaghbeach #irishcoast #sea #ocean #achillisland #Achill #Ireland #irishshore #magicbeach #giftfromthesea</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-03-08T19:48:08+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 8, 2018 at 11:48am PST</time></div>
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<a href="https://www.instagram.com/p/BgHpOJKBdk_/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">•More honeymoon pics... Rush hour traffic• . . . . . . . . . . . . . . #holiday #honeymoon #irishholiday #irishhoneymoon #keel #Achill #achillisland #keelbeach #beach #sea #irishcoast #sheep #travelireland</a></div>
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A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-03-09T22:35:44+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 9, 2018 at 2:35pm PST</time></div>
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We visited all the usual favorites, but most importantly we got to see <a href="https://www.facebook.com/achillhenge.info/" target="_blank">Achill-Henge</a> -the strange and magnificent protest/ art piece/ "place for reflection"/ random rock formation, created by Joe McNamara in 2011. If you Google Mr. McNamara, you'll find:<br />
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<h2 style="text-align: center;">
<a href="http://www.thejournal.ie/mayo-property-developer-tower-bridge-london-2085642-May2015/" target="_blank">Mayo Developer Erects Statue in London City as Form of Protest</a> </h2>
<h2 style="text-align: center;">
<a href="https://www.irishtimes.com/news/developer-jailed-over-achill-henge-1.888092" target="_blank">Developer Jailed Over Achill-Henge</a> </h2>
<div>
As it's not exactly meant to be a traditional tourist attraction (heck, it was meant to be ripped down years ago but thankfully hasn't been), it can be a bit awkward to find. Even with sat nav. Being not very able-bodied, I was weary about attempting any kind of climb or hike. Walking on flat grounds has it's issues and obviously a wheelchair would never get up there. But I reeeeally wanted to do it. It took two attempts. The second morning I woke up in agony and could barely move and was having serious second thoughts, but luckily within a couple of hours I could walk and decided to at least chance it. I knew I would regret it if not. It was hard, but not too steep in places. If you're generally able-bodied, you'll be grand like, but it's really in the middle of no where.<br />
<br />
We've created a small video -or rather mashed together some photos and clips to create something that hopefully, partly makes sense. A vague how-to guide on getting to Achill-Henge, with both terrible sound and terrible picture. Random rotating accents as part of the director's cut. If you also want non-helpful commentary about the island, we got you covered fam. #Sheep<br />
<br />
My cat rated it three stars.<br />
<br />
Well worth a visit. It's unique and eerily magnificent and made even better by the shitty attempt at sign posts. Hopefully the council remain lazy in their approach to remove it.<br />
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-70718507910513236022018-03-23T20:42:00.000+00:002018-03-23T20:55:13.821+00:00Repeal - A short filmDid you know I'm pro-choice? Really, seriously? You didn't? Ok newbie, check out a couple of previous posts if you plan to stick around...<br />
<br />
<h2>
<div style="text-align: center;">
<a href="http://www.cripplebaby.com/2017/08/more-than-just-abortion-more-than-pro.html" target="_blank">More than just abortion; more than pro-choice</a></div>
<div style="text-align: center;">
and</div>
<div style="text-align: center;">
<a href="http://www.cripplebaby.com/2018/03/in-my-shoes.html" target="_blank">In my shoes</a></div>
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<br /></div>
</h2>
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<img border="0" data-original-height="600" data-original-width="600" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcP12AmmToxgZY9zErXrPix8fnbWLQtZn0zSeMpEZxtpVl7HYhECLsqq4I1AXK8_YtBMc8oO6UULYf_UN3TLiCTflw2_MHNbt9RP33K8qAkci4Tb0zL4_6Dsl5ySkBKRAeIf7Z9Gp5zbc/s400/Repeal+Image.jpg" width="400" /></div>
<a name='more'></a><br />
As a proud Repealer I'm very excited to hear about a new short film on the issue, written and directed by <a href="http://www.imdb.com/name/nm8747480/" target="_blank">Karl Callan</a> with the aim of showing his audience the faces behind the 8th amendment. Three stories, from three Irish women, depicted in poignant scenes by actors <a href="http://www.imdb.com/name/nm2258085/?ref_=tt_cl_t2" target="_blank">Maureen O'Connell</a>, <a href="http://www.imdb.com/name/nm1890257/?ref_=tt_cl_t1" target="_blank">Lynette Callaghan</a>, <a href="http://www.imdb.com/name/nm6103543/?ref_=tt_cl_t7" target="_blank">Aidan O'Sullivan</a>, <a href="http://www.imdb.com/name/nm8210173/?ref_=tt_cl_t4" target="_blank">Michael O'Kelly</a>, <a href="http://www.imdb.com/name/nm9547279/?ref_=tt_cl_t8" target="_blank">Niamh Walsh</a>, <a href="http://www.imdb.com/name/nm5511531/?ref_=tt_cl_t3" target="_blank">Rebecca Thompson</a>, <a href="http://www.imdb.com/name/nm7516884/?ref_=tt_cl_t5" target="_blank">Maria Fiorentini</a>, <a href="http://www.imdb.com/name/nm8914754/?ref_=tt_cl_t9" target="_blank">Patrick Bokin</a>, <a href="http://www.imdb.com/name/nm7250091/?ref_=tt_cl_t10" target="_blank">Conor Waldron</a> and <a href="http://www.imdb.com/name/nm7752993/?ref_=tt_cl_t6" target="_blank">Sofia Bwcka</a>.<br />
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<span style="color: white; font-size: x-large;"></span><br />
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<span style="color: white; font-size: x-large;"><i style="font-family: "Courier New", Courier, monospace;">"I researched the stories, spoke with women I know who had been through</i> <i style="font-family: "Courier New", Courier, monospace;">similar situations. I also spoke to</i> <i style="font-family: "Courier New", Courier, monospace;">medical professionals and learned of the </i><i style="font-family: "Courier New", Courier, monospace;">difficulties they go through as a result</i> <i style="font-family: "Courier New", Courier, monospace;">of the restrictions put on them.</i><i style="font-family: "Courier New", Courier, monospace;">I wanted to make sure the film was as realistic as possible"</i><i style="font-family: "Courier New", Courier, monospace;"></i></span><br />
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<i><span style="background-color: #666666; color: white; font-family: "courier new" , "courier" , monospace; font-size: x-large;">- Karl Callan</span></i></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/o321j2_NoeI/0.jpg" frameborder="0" height="466" src="https://www.youtube.com/embed/o321j2_NoeI?feature=player_embedded" width="520"></iframe></div>
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This unique film is set to be released April 6th, 2018 on social media, so keep an eye on <a href="https://www.facebook.com/repealshortfilm/" target="_blank">their Facebook page and give it a like</a>. </div>
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If you are lucky enough to live near Dublin, there's going to be an early screening with limited spaces. So get in there quickly! See the event for details - </div>
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<a href="https://www.facebook.com/events/1976608112555878/" target="_blank">Repeal Short Film Private Screening</a>.</div>
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And sure be sound and also follow them on <a href="https://twitter.com/Repealshortfilm" target="_blank">Twitter</a>. The more publicity, the better. </div>
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I'll post up a review once I get my peepers on the finished product!</div>
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<span style="color: magenta;"><br /></span></div>
<h2 style="text-align: center;">
<span style="color: magenta;">Live in Louth and want to get involved? We're starting to canvas soon in Dundalk and surrounding areas! See our <a href="https://www.facebook.com/dundalkprochoice/" target="_blank">Facebook page</a>, give it a like, and to get directly involved join our <a href="https://www.facebook.com/groups/1864831367088352/?source_id=1704174066544462" target="_blank">Facebook group</a>. </span></h2>
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<a href="http://www.facebook.com/dundalkprochoice" target="_blank"><img border="0" data-original-height="400" data-original-width="282" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiinziTn0OjIZG8mpZkGEH_AcTT2BGBkBoGGJrZXaZ9BIFm8Sxsc1S1mSUhyphenhyphenl7swRHSmhievhBp56N5LoiXT0mdSw7utW5A6TRYN5tt2DpNza89JgXFuxb8F-VSMWCZZeOJIcB90J0_K3c/s400/d4c+print.jpg" width="281" /></a></div>
CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-28363681566145416972018-03-16T21:55:00.000+00:002018-03-20T21:24:15.247+00:00In my shoes<br />
<div class="separator" style="clear: both; text-align: left;">
<i><span style="color: #3d85c6; font-family: "times" , "times new roman" , serif;">I
was inspired to write this piece because of the brave and harrowing tales that
have come out of late, on the Facebook page <a href="https://www.facebook.com/RepealTheEighth/" target="_blank">In Her Shoes</a>. This is a marvelous
page, and the perfect way for those who don’t understand the complexities of
<a href="https://www.repealeight.ie/background-to-eighth-amendment/" target="_blank">the 8th Amendment</a> to see how it has affected everyday Irish women. When you’ve
never been in a situation yourself, it might be difficult to grasp others stories
-especially when each case is so different to the next. It’s also hard to
understand how <a href="https://www.repealeight.ie/background-to-eighth-amendment/" target="_blank">the 8th amendment</a> effects far more than abortion laws
and has had detrimental results on the health and lives of wanted pregnancies,
and the women involved. </span></i></div>
<span style="line-height: 107%;"><span style="line-height: 107%;"><i><span style="color: #3d85c6; font-family: "times" , "times new roman" , serif;">
For those who wish to learn, <a href="https://www.facebook.com/RepealTheEighth/" target="_blank">In Her Shoes</a> highlights these stories perfectly. <br />
If you live in Co. Louth and have a story to tell, please contact <a href="https://www.facebook.com/dundalkprochoice/" target="_blank">Dundalk4 Choice</a> and we will write it up on our page.</span></i></span></span><br />
<span style="line-height: 107%;"><span style="line-height: 107%;"><i><span style="color: #3d85c6; font-family: "times" , "times new roman" , serif;"><br /></span></i></span></span>
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<span style="line-height: 107%;"><span style="line-height: 107%;"><span style="color: #ea9999; font-family: "times" , "times new roman" , serif;"><b>CW: Miscarriage, foetal tissue, trauma. </b></span></span></span></div>
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<i style="font-size: 13pt;"><span style="color: #ea9999; font-size: 13pt;">_________________________________________ </span></i></div>
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<span style="font-size: 13pt;"><span style="color: #ea9999;"><br /></span><img border="0" data-original-height="578" data-original-width="1064" height="347" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2l-MnVqp2xDdNLMDFee1CpCWEL3ReEJ4pbuuxuajjKNNIxmu59Ot3pjNMwosXQCGQH0pnVvRFIQSTWRUnquNs3W7aayP4oBFADddup4Pj4YaVnyWIAxPGS_B-0YOgf32m6U6BP0g2N5s/s640/0p1PO1521231354.jpg" style="font-family: "Times New Roman"; font-size: medium; text-align: center;" width="640" /><br /><br />
“I can’t detect the heartbeat” -A dreaded sentence. It still hits me in the
face. <br />
<br />
I was 23 and pregnant -unplanned but I knew I didn’t want to have an abortion.
I had been using contraception, but these things happen. Shortly after we found
out I broke things off with my boyfriend as I didn’t see a future with him anyway,
and decided to go it alone. It was going to be tough, but I knew it would be
the best thing to do for me and my future child.<br />
<br />
My first appointment went normally, the nurses were nice, and I filled in the
usual forms. I looked a lot younger than my actual age and I was very aware of
this, it’s always been something that has worked against me. As there was a query
over gestational ageing I was sent for a scan. I think I had missed at least
two periods, but was unsure if more. The doctor had guessed I was about 10
weeks along.<br />
<br />
Going for the scan by myself everything happened so quickly. “I can’t detect
the heartbeat” was all that was said at first, that sentence ringing in my
ears and hanging in the air for what seemed like an eternity. As utterly
devastating as that moment was, I knew there was no hope. I knew I was far
enough along for a heartbeat to be detected. They estimated the foetus to be
around 8 weeks or so, meaning the pregnancy had ceased about two weeks prior to
my scan. I waited, shocked, to hear about how they would go about a D&C.
But it was not mentioned. Instead they hurriedly tried to tell me “there’s
still hope as you aren’t bleeding”, and “we just have to wait and see, but
there’s nothing we can do”. I was confused, even more confused and lost than I had
been at hearing the news I had miscarried. What did they mean, was the scanner
broken? Even still, they knew the growth should have been more than 8 weeks along…
<br />
</span><br />
<a name='more'></a><span style="font-size: 13pt;"> I got the bus home and waited to bleed. Still hanging on to a tiny bit of hope
that they were correct -that somehow the machine was broken and that all their
vast knowledge had failed them. I knew that wasn’t the case, they knew that
wasn’t the case. This was simply protocol in a country where doctors and nurses
fear prosecution, fear for their jobs. In a country that lets their women run
the risk of infection, while trying to deal with an already tragic situation. They
booked me in for another scan, 3 weeks after this incident. I went home and
told a select few family and friends, although I had no answers to tell them.
And waited for the pain and bleeding to begin, while still clinging to a tiny shred
of hope.<br />
<br />
Fast forward two weeks, a couple of days before my next scan. I began to bleed.
Finally. It was a relief, and I say that with utmost honesty. This story could
finally be over, and I could grieve and get on with my life. In between scans I
had no medical help or contact with a doctor. I was left confused, upset and
then terrified as I realised the deceased foetus in me was ticking time bomb
for infections and issues. At last, I was bleeding. For those of you who have
never been through a miscarriage in Ireland, let me tell you -It’s not like
what you might see on American TV. You don’t just get to rock up to the emergency
department and ask for a scan, or even pain killers. Your told you’re just bleeding,
like a miscarriage is a normal thing, so there is nothing they can do. Usually
with an “I’m so sorry” thrown in. But you need an appointment for a scan. Even though I had never been in this experience,
I knew my own country. Still, I rang the hospital, explained the situation.
They instructed that I come to the appointment time as normal.</span><img border="0" data-original-height="536" data-original-width="800" height="428" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJlwecIOgEZEDv_N4HaUmu6Q1OdKRic1VfHpHhmlixYDWSNPNVMcTwJG3AHQ39sxYLAvy8_8jbdGnCnn1xNwMkyyguI8hmGuYHHGAnrrU34YJaJ7AcWBle_nkO-crw7G2v4z3C1aLjGOM/s640/coach_seats.preview.jpg" width="640" /><br />
<span style="font-size: 13pt;">Back to the early pregnancy unit for my scan the following week, I was waiting
hours for the appointment and surrounded by both happily pregnant women and
crying babies zipping past in trolleys from the maternity ward nearby. I was
still bleeding from before the weekend. I have a pain condition anyway
(Ehlers-Danlos syndrome), so I can handle pain quite well, but I was uncomfortable.
I was exhausted and weak and didn’t feel right at all. Eventually I was brought
in and scanned, and they confirmed that I had definitely miscarried. They had my
first scan on file I noticed, and I asked if I could have a copy of the photo,
feeling quite silly for even asking... Part of me thought it would be a nice momentum,
the other part of me was just so physically weak from bleeding that I thought
they would think I was being morbid and overly sentimental. I was sharply told
no. I wasn’t given a reason. I wasn’t given pain killers, or antibiotics, or
advice. The nurses were lovely -kind, compassionate… but nothing was their
decision. I was told everything had
passed and sent home.</span><br />
<div>
<br />
<span style="font-size: 13pt;">
But I kept bleeding. Days passed in a haze; I was so weak and tired. My hips
were in agony, I could barely walk. I went to my GP who took one look at me and
said it was a medical emergency. Infection was overtaking, and it was clear I
needed a D&C. Being over polite (as I can be, especially back then) and being
so confused mentally from blood loss, I rang the early pregnancy unit to ask
advice. I explained what my GP had said but was wondering if best to show up
now (evening time) or wait until the following morning, when they might be less
busy. The nurse I spoke with was incensed, how dare my GP tell them how to do
their job. She told me I was fine and didn’t need to be seen, before hanging
up. This began an argument between my GP/ the receptionist and the hospital,
all over phone. I eventually went in, but was very wary after everything. The
same nurse greeted me, and I could tell she was still annoyed…</span><br />
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<div style="text-align: right;">
<div style="text-align: left;">
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</div>
</div>
<span style="font-size: 13pt;">
Back in the scan room. By now I was so sick I could barely speak. I had gotten
the bus to this hospital (dumb, I know, but I couldn’t process anything at
all). Surrounded by people who were so rushed off their feet, in an already overworked
hospital, they didn’t have time to introduce themselves. The place was busier
than I had seen them before. My GP had explained to me that they would do a
D&C, keep me in overnight for observation and to control the infection -she
had written them a detailed letter asking them to do so. This wasn’t to happen.
They internally scanned and spoke to each other, never to me. “Yeah that’s
there” one would say and point to the screen, another would advise and point at
something else. Words and phrasing I didn’t understand thrown about. I couldn’t
lift my head. Suddenly, without warning, the suction began -right there in the
scan room. I could barely scream, but I think I mustered something. It felt
like my ribs were being ripped apart, I could feel myself passing out. I went
into shock. It was excruciating, and no one explained a thing of what was
happening. In the end they had a specimen jar full and placed it on the end of
the examining table that I was lying on. Naturally there was blood everywhere,
I could see again. I could see that jar at the end of the table. I was
screaming in my head for them to remove it but I couldn’t speak. FUCKING MOVE
IT. </span><br />
<br />
<span style="font-size: 13pt;">
I wasn’t kept in, there was no mention of it at all. They were busy, the hospital
was like a warzone. I was given an injection to help close the uterus. I wasn’t
given pain killers, I wasn't given anesthetic, I wasn’t given antibiotics. I was told “things will be
better one day, when you’re married” and “god will bless you one day when you
are older”. The annoying assumption of religious beliefs, as forever rife.
Either way, what a ridiculous comment to make to any human being. Looking young
was biting me in the ass again, they thought I was a child. Not that that
matters, no one should be spoken to like that. A lot of sane, healthy, normal
people have children without being married! You’re told the pain is “normal”,
you should be in pain. Along with the other comments, this is beginning to feel
like a punishment for being unwed. Ridiculous notions that no one would get get
away with saying to healthy people, who aren’t in the midst of infection and
confusion. I was too sick to say anything back. My head was in a spin, this
wasn’t the 1950’s -it was 2008. I could barely walk and was left to get bus
home to my own town. </span><br />
<br />
<span style="font-size: 13pt;">
My GP gave me painkillers and antibiotics the next morning, screamed the place
down, put in complaints. But none of that can change the laws. I should have had
a D&C to begin with, the very moment we found out I had miscarried. Though
the extent of it lessoned, I still bled for weeks. However I never went back to the hospital. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="960" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzd30r87g2uV49iJiia8GEk4b_vJy9k-8QDvVudJnMxWz8nK7VE90PaU7ALYtITDG_vZGhXZl-etWqJ5btP6l6qScgA2-tkKRjKY0T2hsZDbqHC8h7IHC_9XkG5XL32yDRE5l_TZLQ5zs/s640/10412024_10153678420792317_7655267951515259810_n.jpg" width="480" /></div>
<span style="font-size: 13pt;">While a lot of issues may come down to funding and staffing problems at hospitals,
we are putting a strain on an already failing system. Our hospital staff are busy
enough without the need of trying to work around ridiculous laws -they should be
allowed do their jobs as they were supposed to be done, not left to deal with
the emergency problems that then arise afterwards.</span><br />
<br />
<span style="font-size: 13pt;">
Other people may wish to point out that “these things happened before the 8</span><span style="font-size: 14.4444px;">th </span><span style="font-size: 13pt;">amendment
was introduced in 1983”. True. And that was also very, very, wrong. But now we
have it shrouded in law, written in stone that these things are ok, that these
things should continue to occur. Without overturning the 8th</span><span style="font-size: 13pt;"> amendment, we can’t change anything. Maternity healthcare should be progressing
along with everything else in society, not staying stagnant or moving backwards.
</span><br />
<br />
<span style="font-size: 13pt;">
I didn’t decide to tell this story lightly. Like many Irish women, </span><a href="http://www.cripplebaby.com/2017/08/more-than-just-abortion-more-than-pro.html" style="font-size: 13pt;" target="_blank">I have several stories to tell about how the 8</a><a href="http://www.cripplebaby.com/2017/08/more-than-just-abortion-more-than-pro.html" target="_blank"><span style="font-size: 14.4444px;">th</span><span style="font-size: 13pt;"> amendment</span></a><span style="font-size: 13pt;"> has affected me -during
my cancer diagnoses or having to wait for x-rays/ not being believed that I wasn’t
pregnant, even with a pregnancy test. But none of these minor annoyances really
cut it. I knew at some stage I would have to talk openly about my miscarriage experience, in raw detail, and why I was left at risk like that. I have no idea yet of the long-term
implications of it all, and we won’t know until I try for children. But I knew at some stage that I wanted to be open about it all, if it reached just one person who didn't understand life under the 8th. </span><br />
<br />
<span style="font-size: 13pt;">
This is my story. This doesn’t always happen during miscarriage. Some women are
“lucky” (and obviously I use that term lightly) in that it’s more straight
forward… But my story should have been straight forward. I should have had a
D&C when my body failed me. I shouldn’t have had to wait, because of some archaic
law that a foetus is the same as me, holds the same rights… My wanted pregnancy
had ended. All the hope in the world was never going to change that. All the
most ridiculous laws in the world WAS NEVER GOING TO CHANGE THAT. Instead I was
left riddled with infection and an uncertain fertility future. </span><br />
<br />
<span style="font-size: 13pt;">
And you know what? I’m still here. I *was* lucky. <br />I was made suffer because of
the 8th</span><span style="font-size: 13pt;"> amendment, but I lived.</span><br />
<br />
<span style="font-size: 13pt;"> </span><span style="color: #ea9999; font-size: 17.3333px;">_________________________________________</span><br />
<a href="https://www.facebook.com/dundalkprochoice/" target="_blank"><img border="0" data-original-height="1600" data-original-width="1128" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVFMNXBgyu4_uy85Xizq9HG1TXe9_T2diwBEeq9h-Z0L-AHJJANBTpK_yI2wVKAXjAlC4Vwpcy7SuWXqpGpjHWIsGloIqVVGf7SXJqlfC67QMW0auCJxPJHcCN7p5DIgdxTCkRmHm09-4/s400/d4c+print.jpg" width="281" /></a><span style="font-family: "calibri" , sans-serif; font-size: 11.0pt; line-height: 107%;"><span style="font-size: 11pt; line-height: 107%;"> </span><!--[endif]--></span></div>
CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-43282349533939037932018-02-24T22:02:00.001+00:002018-02-24T22:02:33.166+00:00A Poem: Living Under Anna's Veil<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I promised to eventually post more poetry (<a href="http://www.cripplebaby.com/2017/08/a-poem-snow-globe.html" target="_blank">click here to see the first one I added to the blog</a> a few months ago), so here we go...</div>
<a name='more'></a><br /><br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi09qhW79sjn4RiWNvNp34UnJeDQVTaLbODUbIWlBOa2CUK9UNOOZO3NLDsFzQYP1nz-GI7_omt56MjStPtICl32wLSBPXDt9Pz5ClTzV0vOuT40HlYXxsRNVBwZPHwU4TK0xZabmFUjtQ/s640/Annas+Veil+%25281%2529.jpg" width="640" /></div>
<br /><br />CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-53718999740716597052018-02-19T00:22:00.000+00:002018-04-07T23:32:45.712+01:00Health update - Upright MRI 2018<div class="MsoNormal">
<span style="font-family: "georgia" , serif;">Hi everyone,
thanks for stopping by! Here goes with all the boring health updates. Starting
firstly with the obvious, the important London stuff including <a href="http://www.trulyopenmri.com/" target="_blank">upright MRI</a>. </span><img border="0" data-original-height="899" data-original-width="1600" height="356" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDpppL76jXhHM-fX-Y2IhAS-8a3yElQ1hnf56LOdIdmM225r493rJHuUBiGxI2tkbEc5TYykDAOsJToRNcZLYszR0A-xOIUgKldYfkL9WmSjRDvIS6ZYl2OhDcUsBhsTXz6P4OW6TL_wk/s640/WP_20180205_11_33_41_Pro.jpg" style="text-align: center;" width="640" /><span style="font-family: "georgia" , serif;"><br />
<br />
At the start of the month myself and Bicky set off for London for the upright
MRI and to meet with an experienced physiotherapist there. We booked three
nights in the hotel, knowing that travel is very difficult, tiring and painful.
And from what I had heard the upright MRI is no picnic (plenty of rest needed
afterwards -not travel). Flexing the neck triggers the symptoms we are there to
investigate in the first place. <br />
<br />
I spasmed, jerked and gagged during the long and slow scans. But all in all I did
pretty well and was quite proud of myself. It wasn’t pleasant, to say the least,
but the staff were lovely and understanding. Afterwards I vomited, the gag
reflex was just too much, but that was after the fact so I’m not counting that,
haha.<br />
</span></div>
<h2 style="text-align: center;">
Physio</h2>
<br />
<div class="MsoNormal">
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">The
next morning I met with the physio, and what an experience! I don’t think I’ve
ever had such a comprehensive and educational appointment. I learned so many
interesting things about how my body works. The lovely physio didn’t have my
MRI results, which the consultant had hoped she would by then. But by simply
feeling my spine and areas of my body, she was able to tell me a lot about what
was happening under my skin.</span><span style="font-family: "georgia" , serif; font-size: 11.0pt; line-height: 107%;"> </span><br />
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><br /></span></div>
<h4>
Spine</h4>
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">Feeling
along my spine as I moved my head to the sides, backwards and forwards, she was
able to tell me that only part of my cervical spine was assisting in this movement
-unlike with the average person, who moves parts of both their C spine and
their thoracic spine. My T spine is locked and will not move on its own,
causing pain to the overworked C spine. She pointed out that our bodies are
quite amazing, in that if they can’t do something in the normal way, they will endeavor
to find a way – even if that way is injuring us -“Your body will find a way to
make that movement if it can”. So interesting. </span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="338" data-original-width="338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOSFfaORtgMoRMt_Oy0fp17K3IJgA1-Wc3dhVIxPVryl2vSy3qN_hogXeKtYCP5vf9YbuHRkCm6S9u4H8uyWgRtrqKCB3UD684Uas63vfwj81t_rhXo7fl1OmLaRhy_JtadVjmTXD6Q8M/s1600/human-spine-with-parts-coloured_23-2147541001.jpg" style="margin-left: auto; margin-right: auto;" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: red;">Image by Freepik</span></td></tr>
</tbody></table>
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">This explains one of my longest running symptoms and major causes of pain. As a
child I called it “spine freeze” but this is NOT a medical term, merely a
childish way of trying to explain to doctors what was happening to my body. On
lying down my spine would seize entirely, although more so focused at neck and
mid back areas. I could barely move, and any tiny movement felt like my spine was
about to snap. It was like one, long unflexing pole. It was both terrifying and
agonising in equal amounts when I was a child. I still experience this phenomenon
but only a few times a month. Sometimes
I feel what I call twitches when standing/ sitting, but I can unlock these. Unlike
when I’m lying down and I just have to wait it out. While still scary, the
lesser frequency has helped, as does age -I suppose I got somewhat used to it. <br />
</span><br />
<a name='more'></a><span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">It’s a very strange feeling to end such a lifetime mystery, at the age of
nearly 33. I really thought I would never know what the issue was. X-rays didn’t
show an obvious problem when I was a kid, and doctors were stumped. <br />
<br />
When I think of growing up I just remember my dad screaming (through my screams
of pain) that I must have an issue with my connective tissue, as it’s something
that doesn’t show on x-rays. He knew before any of us. <br />
<br />
This spine lock can be manipulated, but with everything else she didn’t have
time (see below for knees and hips). She thinks my physio here should be able
to do it, but I really doubt so. If she could have done, she would have. She is
writing a whole report advising her of this step and all the other information.</span><br />
<br />
<h4>
Hip</h4>
<span style="font-family: "georgia" , serif; font-size: 11.0pt; line-height: 107%;"><span style="font-size: 13pt; line-height: 107%;">Nope
she didn’t fix my hip dysplasia. Haha, imagine -I would be packing her in my
bag and bringing her back to Ireland. But she did note that not only was the hip
in the wrong place (as it’s meant to be on me), but it was also tilted the
wrong way. This seems like a common enough occurrence with EDS patients from
what I’ve heard. Using only her magical hands, she was able to slowly move this
back into place. I have never, as in N-E-V-E-R had anything done like this. And
I don’t mean those absolute quacks who state they can manipulate the spine/
body. She is an actual, qualified physiotherapist. And she was really able to
do it. While it felt a bit weird, it wasn’t very painful. Furthermore, she felt
this was a normal thing for a physio to do and she couldn’t understand why no
one had done it for me up until now. Haha! No. It’s really not a normal thing,
where I live anyway. There’s no way my Irish physio (who I adore by the way!) could
do that, for the simple fact if she could have helped she would have.</span><span style="font-size: 11pt; line-height: 107%;"> </span><br />
<!--[endif]--></span><br />
<h4>
Knees</h4>
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">Moving
down to the knees she noted the knee caps were higher than they were supposed to
be. Em, yuck. My “bad knee” (the right side) even more so. She said I must find
it impossible to do stairs with them positioned there. I assume, again, that
this is a normal EDS thing. Our body parts hate staying in the right place. Again,
she noted – “the body will endeavour to find a way to move”. It’s really
fascinating. <br />
<br />
I always felt, with an illness like this, that my body was against me. Betraying
me in every way possible. But in actual fact it is trying far harder to move
than I give it credit for. Makes me look at my body in a totally different way.
My body is badass. It’s doing things it shouldn’t be able to do. It’s just
doing them in its own way but making the situation worse as a result. Heck,
that’s me all over! <br />
<br />
The manipulation felt quite grosse but wasn’t too painful. However, over the
next few days the knees (again, more so the “bad one”) swelled and became
really unstable, so I had to rest for a few days. I assume this is normal. The
knee did not like being told where to go, har.</span><br />
<h2 style="text-align: center;">
Upright MRI</h2>
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="533" data-original-width="1600" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA9gIJnp81PUNWtG127L_xLxRpaVH9pfMmw8XbbZ583v_50dPMSrZrC5n3BPwM8v_9M_ANSj4qqDSDySfHUBbfl4BMIl4ySvIzT61W_hD_i2EXRFHLY9DwTX_e9JS8jc1uZAIQu2BRhKU/s640/BeFunky+Collage.jpg" width="640" /></div>
<span style="font-family: "georgia" , serif; font-size: 11.0pt; line-height: 107%;"><span style="font-size: 13pt; line-height: 107%;"><br /></span></span>
<span style="font-family: "georgia" , serif; font-size: 11.0pt; line-height: 107%;"><span style="font-size: 13pt; line-height: 107%;">Eventually
after a few days, the consultant emailed me over some information bout the upright
MRI report.<br />
<br />
I have an issue called <a href="http://hypermobility.org/help-advice/chiari-malformation-eds/" target="_blank">Chiari malformation</a> (which yes, is as difficult to pronounce
as it looks, I say it differently each time). This is basically when part of
the cerebellum (the cerebellar tonsils, to be exact) hang down into the opening
at the base of the skull. Mine measure 10mm, although I’m not sure if size is
really important. Luckily it is not at the point of needing surgery, so we are absolutely
over the moon with relief. (note -while surgery may relieve symptoms, it is of
course risky and may not relieve symptoms fully. It’s really only advised if complications
become life threatening, so it wasn’t something I would ever consider unless at
that stage). <br />
<br />
My instability issues are also not at a life-threatening level of needing surgery,
so overall a very positive outcome. <br />
<br />
While this all might all sound disgusting and kinda like bad news, it honestly is
the best case outcome. The results were never going to come back saying there
was nothing happening underneath. Myself and Bicky were well aware of this and
prepared. Chiari is spoken about a lot in The EDS community, as many patients
suffer with this comorbidity. While I obviously would rather have no signs of Chiari
at all, and I don’t know what way this might progress in the future (because A.
I don’t actually know a whole lot about it, if it can progress and B. I have yet
to speak on the phone with my very busy consultant), we are truly overjoyed. <br />
<br />
Following this joy, I had the very human and sincere moment of sheer guilt
knowing that many Irish patients are not so lucky. The amount of Irish EDS
sufferers saving and fundraising for very expensive surgery abroad absolutely breaks
my heart, and was always going to effect how I celebrated my positive news. So I’m
doing so more with a whimper than with a bang, and I hope those who know me
will understand this. Things cannot continue like they are for Ehlers-Danlos
patients in Ireland, they just simply can’t.</span><span style="font-size: 11pt; line-height: 107%;"> </span></span><br />
<h2 style="text-align: center;">
And Now...</h2>
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">Since
then I’ve decreased most exercising other than those done in the pool (other than the prescribed, slight movements), on the
advice of the London physio -and indeed, as insisted by all physiotherapists
who have ever met me. I have a good bit more energy for normal, day-to-day activities.
<br />
</span><br />
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/BfTY7KWB-fg/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><a href="https://www.instagram.com/p/BfTY7KWB-fg/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Rotten, sweaty gym selfie time. 45 minutes at it hard in the pool earlier, yet I wait til Lidl to dislocate my finger. Kitty 0, EDS a million. . . . . . . . . #ehlersdanlossyndrome #EDS #jointhypermobility #gym #pool #physio #spoonieproblems #disabilityblogger</a></span></div>
<div style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;">
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-02-17T15:32:50+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Feb 17, 2018 at 7:32am PST</time></span></div>
</div>
</blockquote>
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"> <script async="" defer="" src="//www.instagram.com/embed.js"></script>
<br /><br />
</span><br />
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">A hang-up of mine that I can’t seem to get rid of… I feel if I’m not in absolute
agony from the exercise, then I am a failure. I know how ridiculous that sounds,
I know I shouldn’t feel that way. I honestly just can’t seem to stop it and
need to work harder at that process. Conditioning of childhood, a result of
inexperienced physiotherapists. Sometimes the psychological issues are just as pronounced
and hard to cure as the physical ones.<br />
<br />
I’m waiting for my next appointment for the physio here, and hopefully by then
will have a report for her from the London physio. I would honestly be surprised
if she could unlock my spine in the way suggested, but we’ll see. The London
physio suggested going back to her every 3-6 months, so hopefully that is on
the agenda. At the very least to make sure all my joints are in the right place.
I didn’t realise I was so bad at knowing! Partial dislocations are an everyday
part of my life. I thought I knew my body, in that respect. <br />
<br />
The asthma nurse switched me to a preventive inhaler, after my peek flow was
only 130. Apparently for my age/ height it should be around 450, but she would
be happy if it was around 350. Yikes. I had no idea it was that bad, normal health
things really get put on the backburner when you have so many issues at once.
She said I will probably feel more energy on a daily basis, and three weeks
later I honestly think I do! It’s crazy. Of course I still have more fatigue
than a healthy person, but for me, I can notice the difference. She explained
that I would have recognised the asthma issues more if I had been as mobile as
the average person, and would have had more asthma attacks. As it stands I’ve
only really had one bad one (at Christmas past). And kind of luckily, as it made
me seek out help. <br />
<br />
Recent medication changes for stomach, vestibular issues and allergies have
also helped immensely. While I still have symptoms and issues, I can be around
music and not want to cry, I have less stomach acid and less random mouth
sores/ swellings. So all brilliant. <br />
<br />
But I’m having problems controlling the gag reflex when I have to move my neck,
particularly during travel, and it’s not pleasant. I might look at some
anti-nausea medications to help this. I can deal with small meals, and feeling
sick after food -all the issues I have with the hiatal. hernia and general GERD. But not just feeling sick and gagging
randomly for no reason (as comes with the neck issues). It’s a sudden kind of
throwing up, so quite uncontrollable. Embarrassing too, if nothing else!<br />
<br />
I’m still trying to obtain heart test results from Louth hospital for the last
few months, and my cardiologist’s secretary has also been on their case. To
date they have sent results of an old ECG (years ago, my pre-chemo one) and
some notes of my holter monitor a few months ago -not the actual report or raw
data. They seem to have an attitude problem and aren’t playing ball. They get
annoyed when I try contact, and I gather the are the same to the secretary. At
this stage I will have to simply apply for my records under the freedom of
information act. Which is ridiculous, but it’s been months. I’m going to contact
my cardiologist next week and request we just do the tilt table test to test
for the suspected <a href="http://www.potsuk.org/" target="_blank">POTS/ dysautonomia</a>, rather than wait for the previous results.
He has concerns that I have other heart issues at play and is worried about
putting my heart under strain. But I really feel the tachycardia is only the
result of some form of dysautonomia, so I might just ask can I sign a waiver (if
he needs it) and go for it. <br />
<br />
I have no idea what the future holds but I’m feeling positive. I’ll deal with
the pain in the best way I always have, and I’m confident with the help of
London that we can monitor the rest of the icky stuff. <br />
<br />
Since London we had a nice night away in Donegal, a Christmas gift from my
sister and brother in law. We’re looking forward to having babas now (fingers
and ovaries crossed)…<br />
<br />
2018, lets be having ya! Ya fat cunt x
</span><br />
<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><br /></span>
<br />
<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/BfOKOnMhwyh/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><a href="https://www.instagram.com/p/BfOKOnMhwyh/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Absolutely stunning views on the drive up, although aslo a hard route -snow and sleet and steep slopes along a mountain road. Now for Buckfast and adventures with my fave person ♥ . . . . . . . . . . . . . #donegal #ireland #Buckfast #snow #ice #sleet #mountains #travelireland #adventures #visitdonegal #ulster #annagary #travel #bucketlist #christmaspresent</a></span></div>
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<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-02-15T14:48:12+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Feb 15, 2018 at 6:48am PST</time></span></div>
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<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><a href="https://www.instagram.com/p/BfOY0LrhWpe/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">~Meetings of the waters. Heartaches in the woods~</a></span></div>
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<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;">A post shared by <a href="https://www.instagram.com/kittypotpie85/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> ☾Kitty Colbert☽</a> (@kittypotpie85) on <time datetime="2018-02-15T16:55:40+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Feb 15, 2018 at 8:55am PST</time></span></div>
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<span style="font-family: "georgia" , serif; font-size: 13.0pt; line-height: 107%;"><a href="https://www.instagram.com/p/BfQaXr7BjAU/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">An bhfuil cead agam dul go dti an gaeltacht? . . . . . . #Donegal #gaeltacht #beach #mountains #ireland #roadtrip #adventure #ulster #ismaithliom</a></span></div>
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</span>CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-53626254586999808422017-12-03T00:00:00.000+00:002017-12-03T02:15:17.665+00:00More than just abortion; more than pro-choice<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #cc0000; font-size: x-small;">[Originally written in August 2017. Updated December 2017]</span></div>
<img border="0" data-original-height="1600" data-original-width="1600" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYZ_6Qzu_cFZ_FcHMeL3L3F6qqz_L-LI3arWoGtuACbkaMNMn2Jh615y_KEVvZ4Aoa123gyFTGf6SiusDdSU5WgDLrdovGWYrTKZ9gBjZQoo405x9DqLHtnziQxs243DovT70QkFv6SVk/s640/blog+8th.jpg" width="640" /><br />
By now most people have probably watched Amnesty International's video regarding Ireland's 8th amendment and why it should be repealed and what issues it currently causes (if not, watch below).<br />
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25 Annoying Things About Being Pregnant</span></h2>
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For me it brings to mind of when I was diagnosed with cancer, back in 2013. <br />
It's probably best to start with a personal story.<br />
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No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed. One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over very vaguely, and only when I tried to bring the subject up. A simple "I'm sure you'll be ok" was all that was given in this respect. Something I realised later was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren't granted free by the HSE, and perhaps some doctors just see it all as a bit "icky"? I really have no idea. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow (sorry lads, not sorry) was a good sign at least.<br />
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No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant <i>during</i> my treatment. Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time -obviously, that would be irresponsible. But as we all know, even with all the contraption in the world -shit happens.<br />
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In this scenario the woman has two choices (in other countries) -continue the pregnancy, reduce your treatment (or stop completely, although that wouldn't be advised by a doctor) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy, and depend on so many factors as well as personal choice. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.<br />
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So when I was diagnosed with Hodgkin lymphoma in 2013, I was quickly informed of what would happen if I became pregnant -They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child bearing age, so it's all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice. <br />
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It became annoying. Especially as there was no word ever made to discuss the possibility of freezing eggs for the future, if the treatment was to effect me in that way. Zero advice given. I only realised that many people have such procedures pre-chemotherapy, through reading stories from others on online, UK based HL forums. I tried bring it up a couple of times in the early days, before treatment commenced, but no one in my team seemed to know anything on the subject. IVF is not available through the HSE and so not worth discussing... Still and all, information on fertility (even if I had to pay for services) would have been a lot more beneficial to me as a patient, rather than the continuous discussion of current, hypothetical pregnancies.<br />
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It's something I've looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus -The life of a fully grown adult is not equal to that of a zygot. Before we even bring choice into it, that's simply the case. As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late term "abortions" due to fatal fetal abnormalities, as we all know that late term "abortions" are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in it's mother's womb, it's horrendous for the parents. It's not something to be mocked, or mislabeled. And it certainly isn't something Irish parents should have to deal with alone, in a different country. A financial burden on top of saying goodbye to their child in peace.<br />
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But in MY case it should be MY choice.<br />
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Luckily I finished my treatments without any accidents. But shit does happen -it happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Would I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just does not cut it. And it shouldn't cut it for anyone. To truly look at this 8th amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, "what if...?". This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don't think I would ever choose an abortion in my life time, as I plan to have children and feel somewhat currently settled in life. But sometimes the choice is taken out of our hands, as with <a href="https://www.abortionrightscampaign.ie/tag/fatal-foetal-abnormality/" target="_blank">FFA</a> cases. But that's the whole point -Saying you are "pro choice" simply means that you realise you do not have the right to decide for anyone else, to judge their life. You simply do not. There are so many scenarios -so many stories that are not our own and we don't get to decide the ending.<br />
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You can be pro-choice without actually ever having an abortion. And that's the case for a lot of people who consider themselves pro-choice. Abortion isn't always an easy option -But it's also important to note that many who terminate have no regrets and know it's the right choice for them; for all sorts of reasons that are none of our business.<br />
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No one can 100% truly say "I will never terminate a pregnancy", even when it seems completely unthinkable in our current lives -shit happens. Either way, the 8th amendment effects <a href="https://twitter.com/aimsireland" target="_blank">#EveryPregnacy</a>. It is regularly cited to take away maternity care choices. It does not stop abortion from occurring, it simply sends it elsewhere (the UK). In the cases of Irish people who cannot afford to travel, it promotes the use of unsafe and unregulated measures. It separates society, brings about class systems in health care -those who can afford safe abortions abroad, and those who cannot.<br />
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This coming year we need to strive for better maternity services, practices, and laws.<br />
We need to keep the church out of state and the state out of our personal, reproductive choices. We need to repeal the 8th amendment and allow for safe, free and legal abortions for all women of Ireland.<br />
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<b>For further information on ways the 8th amendment may effect you or women you love, see:</b><br />
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<span style="background-color: white; color: #3a3a3a; font-size: 19.2px;">❤ </span><a href="http://parentsforchoice.ie/20-things-you-may-not-know-about-choice-in-ireland-today/" target="_blank">20 Things You May Not Know About Choice In Ireland Today</a><br />
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<span style="background-color: white; color: #3a3a3a; font-size: 19.2px;">❤ </span><a href="http://www.irishexaminer.com/ireland/it-was-horrendous-so-scary-woman-whose-son-had-fatal-foetal-abnormality-pleads-with-tds-406720.html" target="_blank">"It Was Horrendous, So Scary": Woman's Whose Son Had Fatal Fetal Abnormality Pleads With TDs</a><br />
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<span style="background-color: white; color: #3a3a3a; font-size: 19.2px;">❤ </span><a href="https://www.her.ie/life/pregnant-women-risk-eighth-amendment-358012" target="_blank">All Pregnant Women Are at Risk Under The 8th Amendment </a><br />
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<span style="background-color: white; color: #3a3a3a; font-size: 19.2px;">❤ </span><a href="http://aimsireland.ie/how-does-the-8th-amendment-affect-continuing-pregnancy-in-ireland-aims-ireland/" target="_blank">How Does the 8th Amendment Effect Continuing Pregnancy in Ireland?</a><br />
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<b>And for some general info about the 8th amendment:</b><br />
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<span style="background-color: white; color: #3a3a3a; font-size: 19.2px;">❤ </span><a href="http://www.thejournal.ie/what-is-the-eight-amendment-abortion-1625596-Aug2014/" target="_blank">Explainer: What is the 8th Amendment? </a><br />
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<span style="background-color: white; color: #3a3a3a; font-family: , sans-serif; font-size: 19.2px;">❤ </span><a href="http://www.repealeight.ie/" style="text-align: center;" target="_blank">Coalition to Repeal the Eight Amendment</a></div>
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<span style="background-color: white; color: #3a3a3a; font-family: , sans-serif; font-size: 19.2px;">❤ </span><a href="https://www.abortionrightscampaign.ie/" style="text-align: center;" target="_blank">Abortion Rights Campaign</a><br />
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<span style="background-color: white; color: #3a3a3a; font-family: , sans-serif; font-size: 19.2px;">❤ </span><a href="https://en.wikipedia.org/wiki/Eighth_Amendment_of_the_Constitution_of_Ireland" target="_blank">Eight Amendment of the Constitution of Ireland</a><br />
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CrippleBabyhttp://www.blogger.com/profile/06874076844367856139noreply@blogger.com0tag:blogger.com,1999:blog-609706155970920065.post-7405004801938962112017-12-02T05:38:00.000+00:002017-12-02T18:18:33.257+00:00Vegan aubergine lasagna<div>
Loving aubergine lasagna at the mo. It's light yet tasty, perfect dish for any spoonie who can't deal with much pasta or heavy dishes. This is a basic recipe, so perfect if you're only transitioning from meat eater and still a bit cautious -All very normal ingredients that you'll already be acquainted with. Also easy to buy in Irish shops... I get so disappointed with American, even English vegan recipes that require things you haven't a hope in hell buying here. "Now add the Flogerddergabu to elder flower dew and beat in dried ugloblili berries as your egg substitute " -eh yeah mate, I'm having issues even finding meat free bread around these parts, but ok... But even though it's quick and easy, it's still full of great flavours. A real comfort food.<br />
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<span style="color: #a64d79;">1. <b>One large aubergine</b></span> -this will be the pasta sheets.<br />
<span style="color: #a64d79;">2.<b> Tomato based sauce</b></span> -simply make your own with some passata or a tin of tomatoes, or I suggest one from Lidl by Batts, red Thai curry (see my photo below, oddly enough cannot find an image online of the product). It's got a creamy taste which I personally prefer for a dish like this as the more sharp sauces have my reflux going crazy. At the same time, it's not a sickening creaminess and is vegan too.<br />
<span style="color: #a64d79;">3. <b>Hummus</b></span> -this will be your white sauce substitute. You can of course simply make a béchamel with a milk alternative, or even buy Tesco's free from white sauce or similar (which Dundalk now have, by the way!), but I personally love the thickness of hummus. It's the perfect sauce really, doesn't turn to water when cooked.<br />
<span style="color: #a64d79;"><span style="color: #a64d79;">4. </span><b style="color: #a64d79;">Your veggies</b>.<b style="color: #a64d79;"> </b></span>LOADS of course. I went for: Cherry tomatoes, peppers and onions. Mediterranean vegetables work best in any lasagna, obviously.<br />
<span style="color: #a64d79;">5. <b>Garlic and herbs</b></span>. You can really use any herbs, go for your favourite flavors or use a simple dry mix.<br />
<span style="color: #a64d79;">6. <b>Grated vegan cheese</b></span>. Currently where I live, north-east, the most readily available vegan cheese are <a href="https://violifefoods.com/" target="_blank">Violife</a> and <a href="http://www.nature-moi.fr/" target="_blank">Nature & Moi</a>. Both have grated versions, or simply buy the block and grate it yourself. You can usually purchase from Tesco and Dunnes Stores. I went for the Violife block from Tesco.<br />
<span style="color: #a64d79;">7. <b>Meat alternative</b></span>. NOTE: I did not add this, and I would suggest you don't either. Unless you are transitioning and still getting used to life without meat, or just trying this out for "meatless Monday"... I just don't think it's that nice for this recipe, or needed in it. Really just see it as a vegetable lasagna, fully packed of veggies. A light, yet filling dish.<br />
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For me adding in the meat alternative would probably be too much (on top of the cheese and sauces). If you have stomach issues relating to your chronic illness too, then consider just having plain, ol' veg. If you do wish to add in a meat substitute, I suggest a dry soya protein mince <a href="https://www.tesco.ie/groceries/Product/Details/?id=260261027" target="_blank">like this one from Tesco</a>. It's really handy in the press as it lasts ages, and quick to make up.<br />
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Tip - For a dish like this, simply soak the protein granules in a bowl with plain water. Cover only until water is slightly visible -don't drown. Wait a few minutes for them to expand/ soak the water, then add in flavourings -soya sauce and dry herbs are good. Then add to whatever food you are making. Add to oven dish with your vegetables in this case, or simply fry up and have with some mash spuds. Yum. It's pretty versatile. </div>
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<span style="color: #a64d79;">1.</span> Pre-heat oven to 180c on a fan assisted oven.<br />
<span style="color: #a64d79;">2.</span> Slice the aubergine vertically into strips and lay flat in an oven dish, similar to how you would work with pasta strips. </div>
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<img border="0" data-original-height="1064" data-original-width="1600" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwLIOjEzjCBc3Ju_CqfKc21w6Rs-ZrAkf-CAaj20ZUkZOZeBSWKrsy7bXpJyX-nYkcT-8UBJ4NhxYjnPAYXKQ7BjqbAexIR98Lk1OzbX4HLy7OYq7pTA1dO30fKGsHYtC7OKxpxI3gMVA/s400/DSC_0117.JPG" width="400" /><br />
<span style="color: #a64d79;">3. </span>Layer your chopped vegetables of choice, throw over some sauce. Add garlic, either fresh or dry or both as well as your chosen herbs.<br />
<span style="font-family: "georgia" , serif;"><span style="color: #a64d79;">4.
</span>Add another layer of aubergine strips.</span><br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "georgia" , serif; mso-bidi-font-family: "Times New Roman";"><span style="color: #a64d79;">5.</span>
Next, spoon out hummus and spread across. Add grated vegan cheese on top. Throw
in more garlic if you wish, too.<br /><span style="color: #a64d79;">6.</span> Add another layer if necessary, but remember you want to finish on a hummus/ cheese layer for the topping. I like to keep it two layers, one of each.</span></div>
<img border="0" data-original-height="1064" data-original-width="1600" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv5y3LaagCE4sL67PpyV4Llx8dSbldFu86pJee3TaAExGh76WMURz5qgDuBhZRb8AyRzOKXbBp73qtkdBBazzIEevNJZ0jvNQoPwcBMm0RjoHrnpyYKHPq_VcRBGrZRwQlKlVWlQSXNII/s400/DSC_0133.JPG" style="text-align: center;" width="400" /><br />
<span style="color: #a64d79;">7. </span>Sprinkle some parsley on the top.<br />
<span style="color: #a64d79;">8.</span> Cook for about 25 minutes then check with a fork, see how it goes through the aubergine. Usually takes about 35 minutes to cook, but time can depend on how thick/ thin the aubergine strips are and how many layers you have added. So make sure to check it.<br />
<span style="color: #a64d79;">9.</span> Serve with a rocket salad. <a href="https://www.tesco.ie/groceries/Product/Details/?id=260813736" target="_blank">If you want a vegan garlic bread, Tesco's fridge section has you covered</a>. </div>
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<span style="color: #990000; font-size: large;"><span style="background-color: white; font-family: "arial" , sans-serif;">。.。:+♡*♥</span><br />This is in no way a sponsored post. I bought most of these ingredients from Lidl, some from Tesco -that's just the craic like, I just shop there cause they are cheap. No monies was exchanged for this post, or favours or promises or even sneaky winks. Just an FYI. I would say otherwise - 'cause not declaring sponsored posts makes bad bloggers. Tsssssk.<br /><span style="background-color: white; font-family: "arial" , sans-serif;">♥*♡+:。.。</span></span><br />
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<span style="color: #b45f06;">Here's some products to look out for...</span></h2>
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<span style="color: #351c75;"><b>Lidl</b></span></h2>
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<b><span style="color: #351c75;">Tesco</span></b></h2>
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