Help Aster replace his wheelchair!

My name is Aster. I am a disabled/medically complex person experiencing houselessness. I am currently at a shelter. I can stay at it for up to four months while I apply for disability and find stable housing. Unfortunately, the only shelter that could take me is in a rural area. It is quite far from my care team and there are no buses here. Luckily, I am able to use medical transport provided by Medicaid to get to my doctor's appintments.

Unfortunately, though, I have found that my wheelchair is insufficient for where I am living. The shelter itself is inaccessible, meaning that I have to rely on rollator to get around. Luckily, I am ambulatory and can walk unassisted for short distances (though, due to the progressive nature of my disability, it has been getting harder and harder to do so). The main issue, in my situation, is transportation - there is no public transportation in this area, meaning that I have to rely on rideshares much more than I normally would.

The electric wheelchair I have makes relying on rideshares very difficult, however. It is a folding model, and fairly lightweight as far as chairs go. Still, though, it doesn't fit in most regular rideshares - the wheels are too wide to fit in a smaller trunk. This means that I have to spend a lot of extra money on XL rideshares and, even then, drivers often refuse to pick me up because of my chair.

Because of this, I need to get a different wheelchair model- something lighter that folds up well and that I can take apart to fit into smaller trunks. I have found a model that suits my needs wonderfully! Unfortunately, though, it is quite pricey. With tax, it costs about $3260. 

I am unable to get a sufficient wheelchair through insurance, as models covered by it are very, very expensive and they often deny ambulatory users. The models provided by insurance are also incredibly heavy and can only be transported by wheelchair vans and public buses. This would be even worse for my independence than my current model is, so it is not an option. 

While I am somewhat able to navigate a house unassisted, I am completely unable to leave the house without my wheelchair. I occasionally am able to doctor's appointments using a different mobility aid, but that is a last resort because I am a huge fall risk. 

As previously stated, my illness is progressive. I have a fairly severe presentation of Hypermobile Ehlers-Danlos Syndrome (hEDS). HEDS is a genetic disorder that affects your connective tissue. Because connective tissue is all over your body, people with hEDS often experience multi-systemic complications. People with hEDS are prone to frequent dislocations and subluxations (partial dislocations). Because of this, I experience quite debilitating chronic pain. That being said, the thing that affects me the most is neurological & immune dysfunction caused by my mutated connective tissue.

I have a co-occurring condition called POTS. This is a form of autonomic dysfunction (dysautonomia), meaning that it affects my autonomic nervous system. I also have another form of dysautonomia called orthostatic hypotension. My dysautonomia causes me to experience tachycardia, low blood pressure, dizziness, and pre-syncope when upright. This largely contributes to me being a fall risk.

I also have other (currently being worked up) neurological issues. I struggle with impaired sensation in my limbs (which makes using them difficult), balance issues, impairment of my digestive system, and bladder paralysis (which causes me to need a permanent suprapubic catheter). As you can imagine, these complications greatly affectsn my ability to stand and walk. I fall hard and often! Fatigue is also a huge issue, which causes me to be stuck in bed a lot.

Health issues can be really scary, but I am trying my best to cope and get to the bottom of things. Housing instability/houselessness does not help with the stress and I don't have anyone in my immediate life to rely on.

I need help and don't have anywhere else to turn! I am currently being put on the wait list for housing assistance, but the only place me and my case manager have found so far is still out here in this rural area and I don't have any other options.

Any help you can give would be very much appreciated. Thank you for reading this and I would appreciate it if y'all shared this post around

Much love to you all,

Aster