Ever since I was a teenager, it's always been about surviving and getting through the day. I should have asked for help a long time ago but as with many with uncommon and less visible conditions it was dismayed or shrugged off. I'm now at a point where there's no other option. I need help. As you can imagine it's been a rough journey, one I've been horrifyingly close to ending a couple of times, but I'm hanging in there and hoping for a change for the better. I'm going to cut right to the chase.
I have multiple life-altering chronic conditions. I have Fibromyalgia, Ehlers-Danlos Syndrome, Hypoglycemia, Orthostatic Hypotension, PTSD, ADD and Asperger's syndrome. These come with a long list of comorbidities as well. On top of that I'm also transgender which have meant a whole additional exhausting story and medical care. Of course that's just long, strange words for most people but explaining them all would never fit on this page. If you'd rather have me personally explain them, feel free to message me and I'll be happy to!
I have better and worse days but the same issues are always there (just in different degrees). I'm in constant incapacitating pain, joint instability, fatigue and anxiety. My muscles will spasm from exhaustion (they have to work their hardest at all times just to keep my joints in place, as my tendons and ligaments won't). I'll get severe dizzy spells and tunnel vision at random times when I'm just walking. There's a lot of reasons but they all lead to this. Since a couple of years back, the physical conditions have been getting worse. Since a few months back it has taken an alarming turn for the worse. I've lost my ability to take care of myself and ADL*. EDS is a condition that is conditionally degenerative. This essentially means that it's going to get worse throughout the years but the amount depends on how well I protect and take care of my connective tissues and joints. My conditions also depend a lot on how much stress i put on my already fatigued body. I have to act now and I need your help.
What I want I am so much more than these conditions, I have passions and desires. Aside from surviving, having an as decent as possible everyday life/managing ADL*, I truly yearn to work with these passions of mine. In short, they're art and dog training. These two subjects have been my reason to live for as long as I can remember, all the way back to kindergarten. They also seem to work very therapeutically for me. I love getting to work with my hands on any type of creative project, although specializing in drawing. And in the same way, I'm the happiest when I get to work with dogs. I'll happily spend my weekends in the woods or at the working dog club with my own four-legged best friend. Aside from training for sports he's raised and trained by me as a personal service dog. I also want to use these passions to give back to society, I hope I'm able to get to that point.
What can help me Aside from the things I already struggle with in an attempt to better my condition like occupational/physical therapy and medications, there are things that can enable me to get closer to handling ADL* and even closer to working with my passions again. These are various everyday items and aids that either supports my body and lessen the strain on my joints or fatigue or help overcome certain obstacles. Additionally they will keep me safe. Some examples of these things are a power wheelchair, new wheelchair tires, braces/supports/splints, ergonomic tools and adaptions, an iPad and pen, decent shoes, expander hands-free leash, freewheel, heat/cold packs, painkillers, ergonomic and supporting chair/table, a pressure relieving mattress and much more. Sadly these are things that I cannot afford by myself as I struggle with supporting my household of me and my dog on a disability income (I am and will probably always be unable to work).
Anything is of help If you feel like you can give up that coffee or have some extra to spare, absolutely anything is of help and so very appreciated. You are saving a life. If you're struggling economically yourself but still wish to help we're very grateful for any sharing of the fundraiser as well. Thank you so much for taking your time reading this. If you donated, feel free to check back every now and then as any eventual progress will be updated here!