Alex's Medical Crisis Recovery Fund

Hi, my name is Alexandria (Alex) Maniak, and this has been the hardest year of my life. I think typing up and posting this is genuinely one of the hardest things I've done, and I've avoided it for months and months. But at this point, I'm so underwater, I don't have a choice but to try and ask for help. Medical collections are coming our way, I have no income and my husband and I are sinking.

Here is my story, my plans, and where your money would be going should you donate. It's a bit lengthy, so I've bolded some bits to help you read through quicker.

My Story:

I have degenerative disc disease from L3 through S1, scoliosis, bilateral pars defects, spondylolsis, and foraminal stenosis in my spine, leading to sciatica down my left side that radiates into my stomach. This has worsened over time to the point of permanently pinched nerves. My spine pain came on in 2015 following my first disc herniation, and at first, this pain just kept me from lifting heavy things, going for runs, and dancing. Then, I started "throwing my back out" left and right (and I mean to the point of losing the ability to walk for days or weeks on end). At first it was during activities like washing the walls. Then it happened while doing laundry. Then it happened when I sneezed... I began to live in fear, and still do, concerning the unpredictability and severity of my back pain.

Then, the final straw for me, it happened when leaning to press an elevator button on the morning of my wedding. Yep, I had every bride's worst nightmare happen to me on my wedding day in December. I lost the ability to walk. I pinched multiple nerves, slipped a disc, and went down the aisle in a wheelchair. It hurt like hell.

I've been (literally) in constant pain of so many different kinds since then. For this, I have gone through physical therapy and 3 rounds of epidural steroid injections. This has lessened my sciatica and rewarded me with the ability to walk for about a quarter mile at a time. My next step is to get a Spinal Cord Stimulator - a battery to implant in my lower back with cords inserted directly into my spinal nerves, which should help dull the pain. If the test trial for this doesn't help, I've been given a green flag for a Spinal Fusion (ALIF) at L5. This is a major surgery, it will take 3-6 months for my bones to grow and fuse together, and I really, really don't want to have one at 27. Obviously, I don't want any of this to be happening, though.

As if that wasn't enough! This story is far from over.

I have also been fighting and seeking diagnosis for a ~mystery illness~, which is severely impacting my cognitive and physical abilities, with swelling in random joints to the point of immobilization, burst veins all over my body, occasional chest compressions which impact my ability to breathe and increase my heart rate to dangerous levels. I've tested negative for most autoimmune, but no one can figure out what the heck is going on.

In October of 2022, I woke up without the ability to raise my left arm. I was a touring musician, uninsured, and had 2 ER visits on the last national tour I played on for extreme swelling, pain, and extreme nausea. I was never diagnosed with anything, or assisted in any way. Actually, the antibiotics they gave me messed me up more. By the end of the tour, my hands were hardly usable, and I was left unable to play guitar or video games for 3 months.

In the weeks following the wedding and my injury, I was prescribed a steroid pack that my body had an extreme reaction to, and was referred to the ER 3 more times before January hit. Which means, when January hit, our deductible started over, despite it being one long event... And we have a very high deductible.

Through the plethora of visits and tests I've had this year, here is all I know for sure. I have fibromyalgia / widespread chronic pain and brain fog. This means something has changed in my brain, and now pain signals throughout my body are misfiring. I will sleep for 10 hours and wake up feeling like I never went to bed due to feeling so much pain in my sleep that it keeps me out of REM. I have practiced meditation and wim hof breathing and exercises to try to lessen the stress that worsens fibromyalgia. I have had sudden, extreme, constant tinnitus for the last 10 months, without loss of hearing, that won't show on neurological imaging and keeps me from sleeping.

Just for fun, the universe also threw in a lump in my breast (ultrasound this week) and increasingly unpredictable and heavy periods, which my gyno is suggests is endometriosis (but it will require an ultrasound first, to approve the surgery that I'll need to get that diagnosis). Just for kicks, I have a hiatal hernia in my stomach as well, which means my stomach is sliding up into my diaphragm. It usually slides back down, but with all of this swelling, it's been the bane of my existence. Alongside all of this, which came on suddenly and without warning, I have been struggling with manic depression, ADHD, and anxiety. I am extremely thankful for my new psychiatrist and my husband. Without them, I'm not sure I would have made it this far into this year.

Again, I very thankfully have regained the ability to walk and lessened my sciatic pain specifically through physical therapy. Still, even without a "flare", I can't walk or really exist at all without pain, or go further than a quarter mile at most before extreme pain that debilitates me. I am told to exercise, but my pain prevents me from successfully completing my physical therapy routine. I can't sit up for longer than an hour, I can't stand up for longer than a couple of minutes without pain, unless I am walking. Some days I'm more mobile than others, but this is my base line of mobility. On bad days, I can't walk to the bathroom on my own, dress myself, bathe, sit up in bed, or do anything that involves flexing my core (that means even things like leaning over slightly to wash my hands, or retrieving items I dropped on the ground). On good days, I can get the brita pitcher from the fridge or sit at my desk for a couple of hours straight. Stuff like that. And this is after 3 shots in 3 months, 1 of which should last a patient for months or even years. I'm in a place where the pain is unpredictable, I was able to play a solo set recently (very very emotionally fulfilling) but couldn't get out of bed the next day.

Things I can no longer do and will not be able to do again until I have receive further treatment include walking longer than a quarter mile, stand or sit for long periods, walk uphill, run, dance, or bike (obviously), do grocery store trips, drive myself, etc...

Why I Am Asking For Help, and Where Your Money Will Go:

This unpredictability has taken away my income and my ability to find income. For the last few years I have made a majority of my income as a touring instrumentalist, which I am very clearly unable to do now. I mourn it every day. Thanks to the nature of things, I am unable to work simple jobs like retail or cashier work due to the base of these jobs including sitting, standing, or walking for long periods. Forget Uber Eats, I have no car and can't flex my leg to drive without worsening my pain. I have yet to get social security disability to come through, and have had no income outside of freelance design work this entire year.

Our deductible is $4,000. We reached that by February. Since it increased from $2,000 to $4,000 when I was added to it, all 3 ER visits from December are considered from a separate deductible. I need to pay this by the end of this year. I owe $5,000 out of pocket for my ER visits last fall.

This year I had 2 MRIs done, a brain scan, a heart monitor, seen a rheumatologist, pulmonary specialist, neurologist, 8 weeks of physical therapy, 3 epidural steroid injections, and wisdom teeth surgery (did I mention my wisdom teeth started giving me horrible migraines?), and so, so many other tests. I need a spinal cord stimulator implant OR spinal fusion surgery, a surgery to diagnose my endometriosis, an IUD implant.

My husband and I skipped our honeymoon and used that fund on medical expenses and to survive rent, which I've been unable to assist with since the beginning of this year. Since we just had a wedding, and I was supposed to be able to help pay, we have multiple minimum payments starting at $500. My husband makes good money, even, but we can't keep up with my medical situation. I think I'm being denied for disability because of that, too, which is far from fair. If I can't work a job, what am I supposed to do? I'm going to keep applying for remote work, and I'm by no means giving up on finding work that I can do through it all.

The money you donate will be focused towards paying my deductible and my rehabilitation and lab bills. If I am blessed enough to receive further, I would use the rest on other medical expenses as listed above. This has drained my bank completely and I am 2-3 months behind on all of my personal bills, and this will keep us from being displaced.

Thank you for reading this far. I've never felt so weak or confused in my life, and even just laying it all out there to the public like this is hard and scary. Any assistance whatsoever would be appreciated more thank you can know. I have about $20 in my bank acct total at the time of writing this. I look forward to a future where I can provide similar assistance to those who need it.

-----

PS: I have a degree in graphic design via Wayne State and experience working in marketing and design, but the competition for remote work is higher than ever. I spent a lot of time playing music alongside pursuing design as a multimedia artist, and my portfolio lacks the evidence of employment my peers have at my age for an entry level position. I have applied relentlessly via LinkedIn, InDeed, Ziprecruiter, company sites, freelance sites, and more, and have had 0 interest. If you know anybody who is looking for a part time to full time remote designer, or even looking for something small, you can refer them to my work at alexandriamaniak.myportfolio.com.

If you're a musician as well, I have had a lot of free time this year and have made some free mental health resources available on my ko-fi in the downloads section. Just write dollar amount 0 and you can download a venue printer friendly. I'll be uploading more soon, so I figure here's a good place to drop that. ko-fi.com/alexmaniak

<3