The campaign picture is from when I was healthy-ish, my hands are not stable enough to take a clear picture of me in the hospital bed but I'm going to include my brain MRI later in this post.
For almost two weeks I have been progressively becoming more disabled in a way I was not prepared for, and it has put me in a tough spot.
The symptoms that have progressed in the past 10 days or so have been as follows:
• Loss of motor control, coordination, and strength in my entire right side, which severely impedes walking.
• Inability to regulate my bladder.
• Inability to write or use my phone/a keyboard with my right hand.
• Extreme difficulty and strain when speaking and trying to pronounce words.
• Muscle spasms that prevent me from bending my leg or uncurling my hand.
• Inability or severe difficulty washing my hair, brushing my hair, wearing contacts, brushing my teeth, putting on and removing shoes, changing clothes. Complete inability to sit in the shower without risk of passing out.
• Exacerbated joint instability from loss of muscle control, causing painful and dangerous joint movement especially in the knee of the affected leg.
• Extreme difficulty feeding myself, between hand mobility and swallowing difficulties.
• Chronic exhaustion coupled with difficulty sleeping.
• Difficulty grasping and carrying objects.
These symptoms became bad enough for me to head to the ER 5 or 6 days ago. I originally tried to manage it through my primary doctor because I have existing neck issues from Ehlers-Danlos Syndrome and I assumed that was the cause. But the treatment for that theory was not working and I was still declining by day 3 of treatment.
When I reached the ER I was immediately given a contrast MRI of my brain, and the results came quickly. The MRI shows signs of demyelination, which is when the myelin sheaths that protect the nerve fibers deteriorate. This inhibits the communication between my nerve cells and my body. I was admitted to MedSurge from the ER, and they have been pushing high dose steroids through an IV for 5 days. They are certain I have multiple sclerosis, but I will need to wait until my lumbar puncture results come back to determine the type. (More info after picture)
I'm going home today and I am unprepared. I struggled through a half day of low intensity work before coming to the hospital, and that is the only pay I'll be receiving for a while. I should be clear to return to work in about two weeks, but my bills are not covered and I have a large list of disability aids I will need that I cannot afford. Braces, a shower chair if I can't find one from a friend, adult diapers which cost $20 for a small pack, masks, a grocery overhaul as my dietary needs have become more urgent, a cane with feet for stabilization, clothes that are loose enough to fit braces underneath and easy to wear, shoes for work that I can slip on, vitals monitoring equipment, ergonomic household devices such as disability friendly cookware, etc. I should be able to source a walker and wheelchair from friends and family, fortunately. But these other expenses are insurmountable with my lost income.
This disaster has forced the love of my life to be the single earner and only driver in a three-person household. My sister is still undergoing physical and educational rehabilitation so that she can work. I can't bear to be putting this much stress on my love so soon after an exhausting and expensive cross country move. He has been beyond wonderful. This man is truly one of a kind. Taking care of myself and my sister without a single complaint, and keeping me sane. But this level of disability and financial strain is a fast track to caregiver burnout, so I am making an effort to be as independent as possible, as soon as I can. For that I need starter money to supply myself for a fast and safe recovery.
In my time off I will be spending all of my available energy relearning how to use the impaired side of my body as well as relearning how to speak clearly, so that I can return to life hopefully at the baseline I was at before the partial paralysis changed my life. I shouldn't need help forever. I tried to estimate a modest amount that reflects my bills and expenses excluding my actual medical expenses.
Please don't donate if it hurts you, but I am desperate and I can't do this alone. Having this financial burden lifted will be invaluable for a faster, stress free recovery. Thank you so much if you have read this far. I hate asking for help, but not asking for help is part of the reason my condition progressed to such an unmanageable level to begin with. Thank you in advance, to all who donate, and all who share my story. Much love everyone ♥️ I pray that none of my loved ones never have to endure something like this. Stay safe everyone.
