My life was uuuhhhhh pretty different a year ago. I just had a surgery I'd dreamed of for years. I had a good job that didn't make me rich but helped to scrape by and take the occasional friend out for food and movies. I had my health, most of all, reinforced like steel beams with years and years of running and lifting and push-ups on my bare knuckles.
Then in October I suddenly had trouble standing. I couldn't do it without blinding pain in my feet. I had to leave my job, I had to move somewhere else, I had to suddenly deal with a lot of dizzy spells and heavy fatigue and walking with a cane. I started with a podiatrist, but nothing he did worked. So I was sent to a physical therapist, but nothing she did lasted, so she had to give up on seeing me. By now the pain and joint looseness had spread to my ankles and knees. I couldn't (and still can't) get through a day without falling at least a dozen times. I went to an orthopedist, who didn't understand what was wrong either, even MRI, x-ray, and bone contrast scans plus a couple types of pills.
Now the joint looseness and pain was spreading to my back, wrists, elbows, shoulders and neck. I was getting really concerned and no one knew what to do or where to send me, including my primary care physician. Then several friends brought a condition called Ehlers-Danlos Syndrome to my attention. They either had it themselves or had friends that did. It's characterized by extreme joint looseness and pain, dizzy spells when sitting/standing, very soft and sensitive skin, and other factors including IBS, difficulty regulating body temperature, tremors and uncontrollable movement in very worn joints, and episodes of rapid heart movement.
The months since I heard of EDS have been me trying desperately trying to get appointments with geneticists, rheumatologists, internists, pain management specialists, neurologists, cardiologists, electrophysiologists, and neuromuscular diagnosticians. I will either be referred to them and they will refuse to see me, I will be referred to them and given an appointment which they will cancel, I will get to their office and they'll turn me away because I have the right health insurance but they don't take it when it's acquired through the Affordable Care Act marketplace, I will get to their office and they will turn me away if I don't pay them $300-$1,000 up front for the appointment, they won't diagnose or treat me unless I've already been diagnosed or treated by someone else in their specialty, they will claim that their specialty "does not do EDS" (when I know that to be a lie), they will say I should go see another specialty (that won't see me) and say I'm not their "problem," they will tell me that they believe I do have EDS but won't check me out for it or refer me to anyone that can help me with it, or will tell me EDS is too rare for me to have and that I must be overreacting but that they also don't know what I have.
All I do is get worse and weaker in the meantime, spend more of the day sleeping and spacing out from brain fog, and have a harder and harder time calling more and more doctors who won't give me the time of day.
In the midst of all this, there have been two pieces of good news. One is I fell in love with someone in SoCal who by unbelievably coincidence also has EDS, and has been helping and supporting me through these struggles. (It took them three years to get diagnosed, and many of my other friends have also found it has taken years to get a diagnosis.) So I will be moving down to them in August. This will cause me to have to restart much of my process of seeking help, but I refuse to stop living my life in the face of my disability. This move to SoCal means that I need a car, since public transit is insufficient down there. A friend sold me a beater car of theirs for $300, which I had looked over by the mechanics of a trusted friend. They tell me that the car will live another 3-4 years, if I get about a thousand dollars in repairs on it. Then I will have some measure of independence and control in my life, as it becomes very evident that I need a wheelchair. Walking to and from Bay Area public transit is becoming very painful and difficult, and trying to rely entirely on Lyfts will be more expensive that just owning a car (even with maintenance, gas, and insurance).
The other piece of good news has been my friends. Friends who've given me some money, or bought me food, or helped me walk to the bathroom or my room or the kitchen when I couldn't, who held me while I cried, who helped me make budgets for costs of a car versus Lyft, who helped me find doctors to call, who drove me to places, who checked in on me. Most recently a very sweet friend gave me five thousand dollars towards seeing better doctors out of pocket. And several friends have been asking me to start this fundraiser.
Tomorrow I turn 30. Tomorrow I still won't be able to walk very well. Tomorrow I still will have to sleep a lot, still will have episodes (thus far as long as 18 hours) where I will barely be able to think, speak, or move.
This all sounds very hopeless, and I understand why better than you, I'm living it. But you can help me, with whatever amount you feel comfortable with, if you like. Let me explain what I am trying to accomplish, and what the money will go to.
1) Repair my car so I can drive to appointments, move to SoCal, and drive to appointments there when well enough to drive.
2) Get an EDS (and postural orthostatic tachycardia syndrome) diagnosis.
3) Get a referral to an outpatient wheelchair clinic.
4) Get a wheelchair.
5) Use 1) to continue to get on permanent state disability insurance, which is a small amount but helps immensely and keeps me from having to do fundraisers like this.
WHERE MONEY GOES: (in order of highest priority to least)
1) The first thousand dollars will go to my car. (This includes $750 in repairs as well as title transfer, insurance, and other miscellany.) This is absolutely vital for me to live somewhat independently, which I will need when moving to a large city where I only know a few people and will have few resources. It's also necessary to get to and from doctors appointments without burning through all my money.
2) After the car, the rest goes into a fund for out of pocket medical expenses. Including:
a) doctor visits, which are $300 to $1000 each depending on the doctor's coding of the appointment. Hopefully I will be able to get my health insurance to reimburse a healthy chunk of this. *crosses fingers*
b) tests, MRI, x-ray, EKG, genetic panels, or whatever else they suggest that I genuinely think is necessary for a diagnosis/treatment and isn't just padding the bill.
c) a wheelchair. I will probably be buying one out of pocket soon, since waiting for an outpatient wheelchair clinic referral is not something I can do much longer considering the increasing uselessness of my legs. I believe I've found one for about a thousand dollars (which is on the low end of wheelchair prices), and I'm having a wheeler friend look over it to see if it fits my needs. I will still be trying to get a chair through the normal insurance channels as well, because a titanium one would better suit my needs and they are $2-3K starting.
d) Gas for my car, and lyft rides when I can't drive.
3) Co-payments for covered visits, including doctor visits, tests, physical therapy, and assistive devices such as a wheelchair.
4) A non-MediCal SoCal health insurance plan, ideally a silver PPO plan from the marketplace for no more than $100 a month. This is least on the priority list because I would prefer to be paying for this from my state disability insurance like I have been since October. But I keep having to find a new doctor each time I re-up on this and there could be a lag time between SDI funds and my need to pay for a plan, so in that circumstance that money would come from this fund.
5) In the extremely unlikely event that I get my diagnosis/ses, get my assistive device(s), get my SDI set to permanent, get a good health insurance plan that covers my needs (for trans healthcare and for ongoing physical therapy and for w/e pills I may need), AND find all of the above now tidily covered under my monthly SDI payment AND if all my health stuff stops being on Red Alert (pun) AND my body reaches some kind of manageable equilibrium AND I still have money left in this fund, it will go towards my next trans surgery, whatever that ends up being (orchiectomy, top surgery, or fat transfer).
So that I can keep better track of this money and not confuse or conflate it with my (lol meager) regular checking account funds, I will be opening another checking account tied to this fundraider so I can easily just reach for the same debit card over and over again when I have a medical need. That will also make it easier for me to keep track of what's being spent with these funds, and if anyone is concerned about how this money is being spent, I would at least be able to release clear records (if I chose to) without violating my privacy.
The funding amount I set at the top is arbitrary past the initial thousand, because I have no idea how long or what it will take to get a diagnosis, medical and state support, and so on. I've been at it eight months and I still don't know when this will end. So you are welcome to donate as much or as little as you like because I cannot honestly tell you what it will take. I could end up with five seemingly helpful but actually unhelpful $1000 doctor visits and burn through all the money my friend provided me. But I do know that if I don't keep working at this anyway, I will just get more unhealthy. So this is me, doing what seems like makes the most sense. And if you trust me to manage the responsibility of your donation and this process, then please feel free to lend a hand to my health.
Well, I think that's it? Thank you for your time and attention, your ongoing love and support, and happy birthday to me, I guess? Thank you in advance if you choose to donate, and if you don't I hope you might consider doing so later if you have the financial liquidity and personal comfort level to do so. <3
Have a lovely day.
- Laura Mandanas
- Molly Kestner
- Sarah Williams
- Jessica Murray
Organizer and beneficiary
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