I am more than my connective tissue disorder! I have it, it doesn’t have me! I am fighting for SSDI again for the second time in a year and a half (tomorrow). I am asking for Gods favor and divine intervention. Please pray with me that my voice is heard! For all the people that have invisible illness-stand up for yourself! Don’t take no for an answer, appeal it, don’t give up! #spoonieforlife #zebrastrong #invisibleillnesssucks
so this bastard burned my #boob
bc im a v #good
judge of character rly do I keep putting this terrible cream on it in the vain hope of #healing
or do I #leanin
it and get it tattooed into a second nipple already #connectivetissuedisorder #zebrastrong #zebraweak
also sorry, nobody who reads these lol I only own lingerie that could also serve as costumes in my #avantLARP
& this was the least absurd of all of them actually & hey if ur into helping w that &ur based in NYC or RVA hahahahahahah DM ME ESPECIALLY if ur ok wearing an #encapsulatedsuit
my doctors forbid me :(
Got a list of all my headache symptoms together to send with my MRI
Headache (back right of head)
-worsened my sneezing/coughing, barometric pressure and elevation changes -sometimes radiates upward
-never goes away, fluctuates in intensity
Pain with swallowing
-stabbing pain to back of head
-food coming out of nose occasionally
Right arm/hand tingling
Right hand numbness
Burning in right arm and leg
Right leg tingling
Balance problems (dizzy and falls)
Ringing/ static in ears
Can’t lay flat - feels like I can’t catch my breath
Loss of gag reflex
I am not really sure if all these things are directly due to the headache but they are things that started happening with the headache. So for things like nausea I have not found a connection between that and my headache but more with my GI stuff so I didn’t include that in my headache symptoms.
I have been doing some reading on the structures of the brain and it is a bit worrisome that the headache and cyst is on the right side of the head about where the cerebellum are located. And the cerebellum functions ipsilaterally (in like the rest of the brain) and my problems are all on the right side.
I am curious to know if there has been changes to what my scan would look like now, since the scan that we have been looking at is from 2016. It is not because of lack of attempts to get another scan done just I have never been able to finish a scan either because of pain or twitching/moving without knowing it.
The only one (which has actually been finished) that might have looked at that part of my brain was done in the ER and I don’t have a copy of it so I can’t just look to see if there has been a change or what.
I hope that is not bad that I am actually hoping we have found the cause of my numbness and coordination problems and maybe even the headache. I don’t even know why I am kind of hoping this is it because it would not be an easy fix if it can be fixed at all.
But at the same time it is something that can actually be measured as being wrong. For everything else there is no blood test or scan that can be done and said this is It
My staycation almost didn’t happen as planned because of an unexpected 6 hour stint in the infusion center on Friday. So thankful for time away to relax but also feeling SO frustrated that this is my life now - IV infusions, P.O. medications, ridiculous amounts of drinking (water), and relaxing in the shade. Just for one day can I be a “normal” 25 year old?! Chronic illness friends- any tips for those days(weeks) when the frustration clouds the positives that are all around?! I’m getting so sick of this 😭
Ultrasound, urine, & blood tests done. I have the rheumatologist appointment this week in 3 days, wish me luck guys! I'm really nervous about it. Last time I seen this doctor he was very rude to me. I have a lot going on I need it to go well, feeling sensitive as f. + test results from my spine MRI will be discussed 🤞🙏
~Healing journey update~ Up untill a few years back I thought everyone was in pain daily and it was just part of living. Wasn't that why people complain that life is so hard and why they sold painkillers at drugstores and pharmacies on basicly every streetcorner? Well, apparently not. But I really didn't know any better. I grew up with pain since a fairly early age. I never knew better, it is my normal.
In december of last year I went to a new PT with another subluxated hip. Just from listening to me describing my symptoms and him observing me, that PT instantly said he thought, no he knéw I had Ehlers-Danlos Syndrom. Wait, what??! Well after waiting 9 months and a 90 minutes appointment at a geneticist it turns out he was right. I do have EDS, which is, if you're not aware, a group of connective tissue gene disorders. I have the hypermobility type hEDS.
Because the collagen in your entire body is basicly faulty it gives wide spread problems and pain. The collagen in your body is supposed to support your joints, muscles and even your organs. When you have healthy collagen it would act like an elastic to support movement and keep everything in place. With people who have EDS you could still call it an elastic although you should think more of the elastic in very, véry old grandma undies that really shouldn't be able to even call themselves elastics anymore.
So, my daily life basicly is: 'pain', 'extreme pain' and 'I wish I was never ever born pain'. Sorry to be so blunt but that is just where I am at, at the moment. My biggest problem right now is that my neck is very unstable and my muscles are trying to keep it in place, they try to compensate for the faulty collagen. This gives severe pain plus tension headaches, jawpain and in my case trigemenial neuralgia, inflammation and irritated and pinched nerves. The muscles are trying to compensate for the instability but tend to overreact and go into spasm. I thought subluxations in my hip hurt, and they do, but this level of pain is almost unbearable. ⠀⠀⠀⠀⠀⠀⠀⠀
Continued in comments⬇️
Class today included these fun belay splits, and a promotion to the intermediate/advanced class! 🤩
Invisible illnesses are sometimes masked with makeup and a smile. Patients, especially women, can often be judged like the cover of a book, but the contents of our book contain so much more.
A much needed weekend with great friends, great food, incredible scenery, Harry Potter magic, relaxation, sunshine, rain, fresh air, deep sleep, cream teas and my favourite person by my side. Thank you @flmackenzie
and Alexander for being the best hosts ❤️
I know I’ve been posting a lot of medical stuff lately and that’s because that’s how my life has been. While I never intended for my page to be about just one thing and I still don’t. I noticed a lot of people have separate accounts for each area they want to share. Personally I’m not into that. I like using my page for sharing my life and interests, because I am more than one thing. Pluse, I feel having more than one account can easily consume to much of your time in social media. But I do still enjoy sharing other stuff and not just medical. What kind of stuff do you all like to see?
It’s such a beautiful day outside today! ☀️ It’s warm and sunny, and I had a little bit of juice left in my leg batteries, so I went outside! In the nature! My surgery is on Tuesday so I figured I should take advantage of being able to go for a little stroll while I could. My legs are jello now but it was so nice to walk through Bowring Park and it was worth it.
Really enjoying letting myself be free with line and color. There are proportion mistakes, but it doesn’t matter. Flawed yet fulfilled is what makes for the best art.
I’ve been quiet on here recently. Life has been just a bit chaotic and I’ve been adjusting to being in full time grad school again + as always a full time patient. The semester started out with quite a bit of challenge but now I’ve found a new practicum/internship site that I’m sure excited about. I had to really self-advocate for it. I will be working at a treatment center for substance abuse in the detox unit. • With added stress self-care becomes even more important, even when it feels like there is no time for it. For me that has meant keeping up with my medications/infusions, doctors appointments and rest. Self-care for me also includes things like watching mindless Netflix shows, time with my partner & friends, juicing and of course trying to move my body out in nature. ☀️ what self-care practice is vital for you?
Why doesn’t this feel normal?
Nobody knows your body better than you. You know when something doesn’t feel right.
Too many people like to tell us that that can’t possibly be true; you can’t possibly be feeling that. Those people are not living in your body. They can only measure things based on their own experiences. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Our bodies go through a lot. When you throw a #chronicillness
into the mix it can get blurry between what is normal to feel and what’s just plain wrong.
We have to listen tentatively to how our body feels and do what is best for us. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Quote from @braidsandblooms_
Ehlers-Danlos Syndrome is a turd of a disease. There is no system in the body it doesn’t touch. These swollen knees, aren’t an uncommon thing in my life. It’s so easy just to write them off, barely paying them real attention because on the grand scheme of things they aren’t that bad. Except, they are.. they hurt.. they just don’t hurt as much as my ribs, my guts, and don’t take up so much room as my nausea. There feels like there is only so much you can feel. My specialist team talk to me how patients like me have their hypothalamus overwhelmed by the endless signals of pain and discomfort we feel. Then our hypothalamus tires out and no longer knows what is important, and what isn’t. Letting through things that shouldn’t get through etc. These knees aren’t the result of exercise or labour. They are the result of sitting still writing all week, in a comfy position which is with my knee bent in a cross leg or kneeling. They are the result of sitting. EDS fcking hurts. Sometimes it hits me just how normal pain has become, when I look down and my knees are bright red and bulging, and it doesn’t even really shock or phase me. It’s the apathy to my swollen painful knees, that really shocks me. Normal shouldn’t have to look like this. My knees are a reminder that we really have no idea what other people’s normal looks like, and that we just need to practice patience, love, and care when we deal with them. We do not know what they have had to make space for in their reality, not because they want to, but because they have to. #eds #edsawareness #ehlersdanlossydrome #edssociety #ehlersdanlossociety #zebrastrong #fragilebutunbreakable #gastroparesis #digestivetractparalysis #hypermobile #ehlersdanlossyndromeawareness