Help Sam get 2 MRIs & back on her feet (literally)

Hello friends! I’m thankful you’re here, and I have a bit of a long-ish story to tell to explain how we got here. I’m embarrassed to have to ask for help, but at this point, I’ve exhausted all my options and I’m not sure how to proceed.

For the TLDR, please scroll to the bottom! I know it takes a lot of energy to read these things, so no bad feelings if you decide to skip it 

Since December of last year (although, if we track my symptoms back enough, this has gone on my entire life and just gone unnoticed because I thought these things were normal), I have been having unexplained convulsions that sometimes leave me disoriented and confused. I have fallen multiple times because of these convulsions, lost an entire week’s worth of my life because I had to functionally sit in stasis (in a cold, quiet room with no light, sound, or people) because it would trigger the world’s worst vertigo, nausea and disorientation, and have suffered a loss of cognitive ability, memory, developed a slight stutter, and gained a significant amount of weight because I’ve been forced into a sedentary lifestyle. For a while, I did my best to keep up appearances: hanging out with friends, managing to complete my work on time, and even going to the gym 4-5 times a week. Since February of last year, the pain in my lower back and legs, as well as the random convulsions, have stolen my life from me. I have lost friends, had to cancel my gym membership, lost my independence (I’m scared to drive because of a recent curb incident that happened when I possibly had an absence seizure while on the road), and basically lost all hope.

I’m currently in the process of getting a for-sure diagnosis, which includes a lot of expensive doctor’s visits. At one point I was working two jobs to keep up with the bills, but was told by multiple of my doctors that, if I was having seizures, a lot of them were due to stress and I needed to cut back on stress wherever possible. I left the more toxic job, which was underpaying me and undervaluing me (for example, when I was at the ER to get my EEG, my old boss texted me to ask how long those took and when I’d be able to get work to them. Or, the other time that my ex-boss called the morning after I was released from the hospital for an overnight stay and said, “If you can’t handle this job, we don’t have a place for you here. I’m not even sure why we hired you if you can’t do the basic tasks of answering emails on time,” in reference to a string of emails sent at 9 p.m., outside of office hours.) I’m with a wonderful company now, and although it’s a temporary full-time placement, we’re hoping I can get in with them permanently. We did the math, I had a bit of savings, and I thought, “okay, we can do this!” So, I left my old company and stayed with the new one, and this relieved a lot of stress and cut down on the episodes I’ve been having.

Then, disaster struck, and it struck multiple times.

Monday of last week (August 8/15), my partner was randomly laid off due to budget cuts and a declining season. To ease the pain of surviving on my income alone, we immediately began the steps to apply for unemployment for my partner, and I began heavily marketing my Fiverr again to help with the income. After a multi-day issue where a certain university in our area removed the ability for past employees to access their paystubs online and the HR department dragging their feet on getting the documents to him, he was able to apply for unemployment, to only be told that he hasn’t made enough from his work to be eligible. At first, this was no worries—he had a job interview lined up and it seemed like more of a courtesy. Nope, rejection letter the day after the interview. We have another one scheduled for him next week, and things are looking hopeful, but we’ve learned not to be hopeful anymore these days.

That brings us to 8/24. I had an MRI scheduled at a local hospital. Upon arrival, the receptionist immediately looked at me with an air of disdain and said, “So you’re here for an ultrasound?” insinuating I was pregnant. I had to explain, through brain fog and pain, that I was there for an MRI scan of my brain for suspected epilepsy. She immediately started acting different, but informed me that, even with my insurance, I was expected to pay $1100 right then and there and asked if I’d like to use a card. I was able to use the last $100 I have before this next paycheck comes in to put down a deposit for this test after discussing with my partner the possibility of us not being able to make rent this month with a bill of this size. We agreed my life was more important than a good credit score, and went on. I was then called to the back to the dressing room, but was told that my partner couldn’t come with me. So, in the middle of the hospital lobby, I was expected to yank out my insulin pump and hobble, unsupported, to the changing room, where I ran into two issues. One, I no longer have the capability to dress myself. This is one of the most embarrassing admissions I’ve ever had to make and my pride is decimated for having to share this, but we’re in dire straits at the moment. Two, I had my septum piercing in and was working on removing it when I realized I also didn’t have the hand strength to do that. I rushed outside to get my partner’s help with one of the tasks (despite me checking with the piercer beforehand that the piercing I had was non-magnetic since I knew I had an MRI coming up, the nurses told me to take it out. To make things better, I’ve recently been told by a different nurse that I shouldn’t have to take a titanium piercing out and that I didn’t need to get changed since I wasn’t wearing any clothes with metal in them. The entire situation could’ve been avoided had someone taken the time to listen to me, but I digress: Hospital workers are underpaid and overworked, and I understand that.) Altogether, this took about 3 minutes before a nurse came rushing out to the waiting room to tell me I needed to get dressed now because there were other patients waiting and “you know, we can’t just sit here and wait on you because you can’t do things by yourself.” I apologized, expressed that we had just had to make a really difficult decision because of the financial burden of the test no one had even warned me about, and because of that, I was crying before the test. This caused my septum piercing to become slippery and difficult to remove, so I asked for just a few more minutes of time and then we’d be ready. Instead, the nurse told me I’d have to reschedule and to go home to my “happy place”—you know, the home and happy place I’d just decided to give up so I could have a chance at living my life again. I have waited for this test since June, and had waited for a neurologist appointment since March of this year. I stormed (as well as someone with non-functioning legs can storm) out of the building, but we weren’t given time to even grieve over this massive failure of the medical system because I had another doctor’s appointment in about an hour to discuss what was going on with my lower back and legs. The cruelest irony in all this? The solution for my leg and back issues will only be solved by another MRI. Another $1100 test. And no, they don’t recommend you do it all at once, trust me I’ve asked.

So now, I sit here, completely broke because of a test I didn’t even get. Yesterday I made 8+ phone calls to different offices, my insurance company, my neurologist, and the two places I’ll be having my MRIs done at next week. I was able to get them scheduled and at different places, so I shouldn’t be in this situation again. However, after the phone call with my insurance, they informed me that due to not meeting my deductible, I’ll have to pay out of pocket for both tests. After that, I’ll have met it, so any further tests should be covered. However, that still puts me with a $2200 bill that I’m not sure how to pay.

If you’ve read this far, thank you. I appreciate you being interested in my plight. The TLDR version of this is we need support, and all kinds: Social support, medical support, financial support. In total, I need to come up with $1525 by the fifth of the month. This covers rent, medical insurance, my car insurance (for transportation to and from doctors), and medication for the month. The other $2200 ensures that, when I get the MRIs, I can afford to pay for both.

I wish I wasn’t asking this. I wish I was able-bodied or able to ignore the pain like I’ve done for the past 10 years. But I can barely take care of myself anymore and it seems like the world just keeps crashing down around me. I can’t brute force my way out of this like I usually do. I can’t work 2+ jobs like I have for the past 7 years. Admitting this is difficult, and I hope you understand the spot that we’re in for me to even be asking for money (especially of this amount.)

If you are able to donate, please do—I appreciate it and I cannot thank you enough. If you can share, signal boost, scream to the heavens about how unfair this is (and maybe share your own stories if you’re comfortable), please, do. If you know me in real life and want to stop by for a chat and remind me that life is worth fighting for, hell, I need that badly right now too.

If you’re looking for a way to donate that doesn’t make you feel uncomfortable, I’m working on opening up a Depop shop to sell some of my old, ill-fitting clothes (yay, weight gain!) and, as always, my Fiverr is open. If you have a side job that I or my partner would be qualified for, please reach out. I may not be the best with messages at the moment, because this is just the “big” and recent stuff. I have such a long story I could tell, but to sum it up: the world is unfair and I need some help.

Once again, thank you for reading this. I appreciate any kindness you have to give. The systems in place are broken and I hope one day they can be fixed, but just know, literally, any type of support you can give would be essentially life changing for me right now. Sending love and extra hugs to those who need it!

-Sam