Sometimes I get jealous of people with more visible illnesses than my own because people take their health problems more seriously. Like, maybe my parents would listen to me if I needed a wheelchair. Maybe my teachers would take me seriously if I had a service dog. But because I appear to be perfectly healthy on a day to day basis, people think I’m exaggerating my symptoms or that my CF is somehow “less severe” than other people. I am thankful for my relative health and not being dependent on aids, but some days I just wish I was a little sicker so that people would listen to me when I tell them I don’t feel well.
It’s more than ok to switch doctors if you feel like the care you’re getting isn’t adequate. It’s not unusual for chronically ill patients to see a dozen or more doctors over several years before they find one who can properly diagnose and treat them. Don’t let anybody make you feel like a “doctor shopper” or a difficult patient just because you want good medical care - after all, we wouldn’t have to see so many doctors if more of them did their job well.
I love when I finally feel like I have a tiny bit of energy and motivation to do a little bit of clean up and about 10 - 15 minutes in my body goes: “oh, you actually meant it?! Haha that’s sooo cute! No!”
Me: I have tried and tested my physical boundaries for 15 years, I know what I can and can’t do. I’m not a school child any more, nobody can force me to actively and knowingly hurt myself. CripplePunk4eva it’s a revolution I suppose.
Also me: Pain is temporary, the social repercussions of not keeping up and doing your part are not. Sure I can carry that thing as well :)
I’ve been to the hospital many times, and I’ve had bad nurses and doctors and good nurses and doctors. My recent overnight stint had pretty decent doctors and nurses. As patients we will certainly remember the more unpleasant experiences and be rightly angry about them.
However it’s important to remember that not all nurses are the bully from school. Many are genuinely nice and caring people, like my aunt who was a maternity ward nurse for many years. Many of these people are put under pressure of a for-profit medical system that forces more patients on less nurses. We should be outraged at genuinely cruel medical professionals, but if we want to be acknowledged as human too, we should do the same for them and advocate for better working conditions for nurses.
Yeah they’re supposed to be professional and not be rude but is anyone truly perfect at the end of a double shift with double the work? And some nurses are disabled too. I’m not against venting against terrible nurses but when we act like the problem is just the wrong people going into nursing we ignore a large problem about the state of nursing jobs and overworked underpaid caregivers that ultimately hurts and potentially kills us. I personally don’t want to do that.
I had some GREAT nurses when I was in for my colonoscopy. After, in recovery, my nurse went so far as to spend 10 minutes using alcohol wipes to gently remove my IV bandage, because I told her it rips my skin because of my fragile EDS skin. Did she have to do that? No. Did she have other stuff to do? Yes. Did I really appreciate it? SO MUCH YES
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
What the literal fuck is this nonsense? Who let this bitch practice medicine? Did anyone think to suggest putting some fucking medical evidence in this piece?
Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.
It’s 4am and I’m up because my stomach is not happy. I don’t know how I’m supposed to wait until December for my colonoscopy when every time I eat I get cramping and diarrhea. My health is still going downhill very quickly, and my meds don’t seem to be helping much. I’m going to email my EDS doctor and let him know what’s going on, because at this point. I feel like we need to re-evaluate what we’re doing to treat my condition.
imagine if shoes cost $2,000 a pair for ones that do not actively hurt you and are designed to be walked on for more than just a few steps. $2,000 at minimum for the luxury of being able to move around without being injured. that is what wheelchair pricing is like
While 2k is the average, I found a $200 one. Not that I’ve spent that on sneakers, and I used to go for nice Nikes too. And this doesn’t add in shipping and customization. But maybe your physical therapist could do the customization adjustments for you.
The problem I have here is that, yes, manual wheelchairs can be found relatively inexpensively. However, powered, or power assisted chairs are INSANELY expensive. I have Ehlers Danlos Syndrome, and as a result, both of my shoulders sit pretty permanently out of socket. I can’t safely use a manual wheelchair without causing myself more irreparable damage, but insurance won’t cover a power chair because I can walk, although it is painful and I cannot walk for very long.
Medical equipment should be affordable! It doesn’t cost $3000+ to manufacture a power chair, and no one can convince me of that. And while we’re at it, give ambulatory people power chairs! A wheelchair would help me so much, I would be able to go out and actually enjoy going places instead of turning down friends because of the inevitable pain I’ll be in if I say yes. I’m so tired of saying no to my sisters when they have plays, concerts, etc, because I can’t spend 4 days recovering.
Sup zebras, I’m starting an EDS YouTube channel. It’s called Braced For Impact (because this bitch is buying new braces ever other week it seems). No videos yet, but I just got my new phone, so let the filming commence!!!
My mom is suddenly mad about “having” to go to my GI appointment tomorrow? She always wants to come to my appointments, plus it’s better to have someone with you, especially being a young woman. And this is the first time ever going to this doctor/ practice.
Also, she wants to make me take an uber to the doctor so she can go out with her boyfriend. How fucking childish.
Yesterday I was diagnosed with EDS type 3, and during that appointment my doctor said that it is likely I will develop further complications within 10 years. Currently I have chronic pain (joint and nerve), sublux/dislocations, migraines, sleep apnea, heat intolerance, intermitant gastric upset, and soft delicate skin, but no POTS or Gastroparesis, ect. Try as I may, I have found nothing on the progression of this condition, and I was hoping the vast spoonie community might have some insights.
This condition has already taken my independence, my college degree, and my active, pain free life from me, and I want to have a heads up if I’m going to lose more. The hope is obviously that I will not get worse, and that meds will help my pain so I can ditch my cane and get back to a semi normal life, but I’m a little too cynical for that right now.
Bringing this back, since I’ve been diagnosed with POTS, am looking for a GI because of worsening digestive problems and weight issues, and am getting a cervical and thoracic MRI tomorrow to look for structural issues that may be causing worsening migraines, skull pressure, and drooping during migraines. My tremors are also worse, and I may have periarticular osteoporosis (whatever the fuck that is, can someone enlighten me? My shit ass rheumatologist lied to me, told me I was fine, and then a year later I found out that she had lied and discharged me)
ALT
