I want to pre face this by saying I’m not suicidal before someone try’s to offer me the number for a hotline or whatever.
I’m at a point where I feel like I’m running out of options and I can’t keep going. I don’t shower one day to the next and I don’t sleep either.
Today I requested my GP start me on bridging HRT (testosterone) as I won’t be able to go to a NHS gender identity clinic for years because of how long the waiting lists are.
The problem is I worked myself up so much to ask that if now I don’t get the outcome I need I’m going to struggle. I already struggle everyday, in the past few months I’ve lost 15 lb because of my mood effecting my appetite. I’m loosing the ability to do things every day because of my lack of sleep and food as well as my already low mood. I’m really struggling and I can’t cope.
I’ll force myself to keep going because I have too but it’s getting harder each day and all I want is to just turn to dust and become a distant uncared about memory to my loved ones but that’s not possible. I feel trapped and I don’t know what to do.!
This is a vent post and I want to reiterate I am not suicidal. I have no intention of committing suicide but I am struggling and needed to vent my emotions right now.
I wanted to update. I’m still in this headspace and my doctor did hours of research and unfortunately the GMC updated their advice so unfortunately he can’t unless he gets the go ahead from a specialist now which I’ll have to pay for or wait longer for the clinic.
At the moment I’m working on saving to pay for my appointment because I need this.
Hey guys, gals, and those who are both, neither or somewhere inbetween. I’ve heard there’s a legend that if you go to a mirror after midnight, but before three in the morning and chant “vaccines are real, my disabilities are valid, and wearing a mask helps stop the spread.” Karen will jump out of the mirror and try to sell you essential oils and peddle some pseudoscience about carbon dioxide poisoning in masks while her unvaccinated son (who has polio) asks if you have games on your phone.
Turns out my hernia may not be a hernia and is likely a gastrointestinal issue, as there’s Crohn’s disease in my family this has worried me a lot.
On the bright side, I’m now being genetically tested (properly instead of just talking to someone about it!) so I’ll finally find out about what type of EDS I actually have instead of their best guess. Looks like it might be classical but I’m cool either way. I’ll also be finding out about a lot of other things through this test so I’m pretty happy about it!
Reblogging for the neck pain ones… whoa Nelly, do I ever get the most killer neck pains.
if youre hypermobile or have eds be careful with some of these
Having EDS and having no gauge for how far you’re meant to stretch.
“You’re telling me I’m not meant to touch my shoulders with my head during the head tilt? Next you’ll be telling me my wrists aren’t meant to click like this!”
I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable
My whole childhood I was like, “Wow! I’m so flexible, that’s so cool! Too bad I have this completely unrelated chronic pain that’s completely normal or otherwise I would totally join the circus!”
I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong.
My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints.
A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist.
I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.
Three doctors shouldn’t have three different opinions about what my diagnosis should be.
My therapist told me recently that she thinks being healthy is a privilege. She said she doesn’t have to worry about whether or not a task will use up all of her energy before she does it, and she acknowledged how hard it is to plan your life around fatigue. Hearing that from her was so validating.
I’ve had bad experiences with therapists before and thought I would never find one who understood chronic illness, but they’re out there. If you think having a therapist will improve your quality of life, keep searching for the right one.
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.
Back when I was in school, a teacher who knew I wanted to be a writer told me that my chronic illness would make me a wiser, better writer. I said something polite in response, but now I would probably tell her this:
I would rather be well and have absolutely nothing to write about. Being sick sucks. Illness has no perks, benefits, or silver linings that I wouldn’t trade for good health.
Our healthcare system is too complicated, and that negatively affects chronically ill patients.
There are too many different health insurance plans to count on one hand: Medicaid, Medicare, HMO, PPO, EPO, POS, HDHP. It’s hard for patients to figure out what all these different policies actually cover.
Insurance companies may require patients to jump through hoops before they’ll cover more expensive treatments. Patients have to try multiple medications and undergo less expensive (but less accurate) medical tests before insurance companies will cover the higher cost therapies and tests their doctors want to prescribe. Sometimes, insurance companies will even try to deny coverage for services they’re contractually obligated to cover. Patients with chronic, complex illnesses often have to fight and appeal insurance companies’ decisions, and may even have to work with patient advocates to get proper treatment. This process eats up a lot of energy and time that chronically ill patients don’t have.
Because of how complicated it is, our healthcare system has higher administrative costs than healthcare systems in other developed nations, leading to higher costs for patients. This hits people like me with chronic illnesses particularly hard.
Even if doctors efficiently diagnosed and treated chronic illnesses (and studies have shown time and time again that they don’t), navigating the healthcare system would still take up a considerable amount of a chronically ill person’s time and energy.
Seeking out a diagnosis and treatment for a chronic illness shouldn’t take years and shouldn’t feel like a part time job. Something needs to change.
I don’t think disabled people should lose their benefits when they get married.
Adults who became disabled before age 22 risk losing their benefits when they get married. Any benefits they receive through a parent’s work record are discontinued, and if their spouse makes too much money, they can’t receive SSI either. All disabled people on SSI, regardless of when they became disabled, risk losing their benefits by getting married. The only people who are guaranteed to keep their benefits are those who worked long enough to receive SSDI through their own work record.
Marriage is an important religious and social milestone for many people, and it confers important legal protections upon couples. I think that all disabled people should be able to get married without losing their only source of income and their financial independence.
taxes. [image: taken from my viewpoint so that arm and joystick of my powerchair are visible. Across from me is a desk with papers and the keyboard my tax advisor is working at]
A photo posted by Kristen Hipwell (@kristen__noel) on
Caption by kristen__noel on Instagram:
Collarbone has been stuck forever..the rest of me is like jello. Today’s heat and sun were way too much even for the brief amount of time I was outside. Brace yourselves….summer is comming.
in honor of #rarediseaseday here’s a full body photo of me rocking my knee braces. i’ve mentioned having ehlers-danlos syndrome twice before on this account, but it’s something that affects my day to day life, so why not talk about it a few times?
There’s a blog post going around saying that “EDS patients have a 90% false negative rate for dipstick testing and still have utis.” This isn’t how dipstick and urine cultures work. There’s either bacteria or this isn’t. Some bacteria from utis will show differently in the dipstick testing for anyone, EDS or not, which is why it’s tested under a microscope and a culture is done to make sure there is an infection. I even checked this with my mother who has worked for 30 years as a lab tech where she tests urine for infection regularly.
But EDS does not give you false negative on uti testing. There is no evidence to back up this claim. No studies. EDS can cause bladder spasms and pelvic floor spasms. These feel EXACTLY like a uti. Mast cell activation syndrome, which is common with EDS patients, can also cause these spasms because there is a large amount of Mast cells in the lining of the bladder. The burning, pain, blood in the urine, cramping, etc. That said the spasms don’t typically cause fevers so that’s a way to tell the difference. If you have a fever with uti symptoms, you need to see a doctor.
So bladder spasms are common in EDS patients and easy to misdiagnose as a uti. Spasms resolve in a couple of hours to a couple of days so people think the antibiotics worked. This has happened to me many times and I’ve been prescribed unnecessary antibiotics for spasms before. Years ago before my doctor figured out the spasms, I had a pretty bad allergic reaction to one antibiotic and ended up in the ER because of this misdiagnosis. Not to mention taking unnecessary antibiotics put you at risk of wiping out the good bacteria in your body and giving you c diff which can be deadly.
Basically, keep an eye out for these spasms when having uti symptoms if you have EDS or MCAS. Talk to your doctor if you’re experiencing this regularly. I’m not saying people with EDS don’t get utis but just that there is no reason a genetic condition would cause false negatives in urine testing.
Here’s your regular reminder that if you have ehlers danlos syndrome or joint hypermobility syndrome, do NOTdo party tricks.
Party tricks are basically showing off how flexible you are and how far you can bend your hypermobile joints. When you push your joints farther that a normal range of motion, you’re risking permanent damage. You’re stretching the ligaments out and risking subluxations and dislocations. You can also increase the amount of dislocations/subluxations of your joints by doing party tricks. Posting these pictures to social media just enforces other people to do it and put their joints at risk too. It’s neat to see and funny to freak other people out until you develop arthritis in your joints or need multiple surgeries on your joints in your 20s. Seriously please just don’t do it. It’s not worth destroying your joints for.
I want to reblog this post every time I see eds people online doing party tricks but if i did, it would be the only fucking thing on my blog. Seriously people, save your joints. Stop doing party tricks. Having metal joints and arthritis before 30 is really not fun.
