More like the “What the F*ck” force…
Before getting really sick, I worked. In fact, I worked so much, I’m pretty sure the stress of it contributed to an increase in flares, and symptoms in general. My relationship at the time was also extremely abusive. Going home was more stressful than being at work, and sometimes I would finish a shift, and just sit in my car in a parking lot because I wanted to avoid my ex. (Yeah, I was winning at life back then.)
Since leaving him and moving across the country, my health improved, before taking a drastic nose dive. As far as we can tell, I was exposed to a fair amount of mold in my first solo-apartment here, but a nasty flare was on the horizon from the moment I moved anyhow. It was a stressful time in my life, and my medications weren’t totally effective anyhow. I got my shit together, found a part-time bartending gig, and made that work…until dehydration, exhaustion, and just general autoimmune issues, led me to having a massive seizure…at work…
After that things got worse. That was when the Rituxan didn’t work, and I couldn’t walk, and we ended up finding out I wasn’t tolerant of Remicade. NYU said do chemo, so we did, but obviously that has failed…so here I am.
The thing is this: I never had a hard time finding work. Even when I was sick, I could find something, I just wasn’t ever sure if I could keep it. When I found out my doctor would be submitting for my wheelchair, I was both elated, as well as disappointed. I don’t want to be the girl in the wheelchair, but being the girl who stumbles around and falls a lot, isn’t a huge bonus either. Plus, with the wheelchair, even shaky and sick days, could still be work days, since I wouldn’t have to worry about fainting, etc.
But how does one find a job that one can do while in a wheelchair?
I cannot work in my degree field, at least not at this point in time, because of issues with shakiness. I’ve decided to move into clinical research guidelines (I think) and do some management of the clinical research that goes on in my area. I figure I may not be able to get into things on a straight laboratory level, but I can still provide oversight. If I don’t get into that, I’ll get into something with public health, maybe even my MPH. In the meantime, though, I have bills to pay. With my divorce hopefully nearing completion, I’ve had to face the reality that I won’t have healthcare anymore. I can pay to keep it, for $475 a month…money I don’t have…and even that won’t give me dental or vision.
Now, if you’ve got Behcet’s, or are familiar with it, you will know that having vision coverage when you’ve got it, is kind of a big deal. I was lucky to have only had posterior uveitis, but it was scary, and knowing that I could get a more severe form (anterior uveitis) that could leave me with decreased vision, is even scarier. I’m already dealing with neurological issues, and GI issues, I don’t need to go blind on top of this. Having some sort of vision coverage, is a priority. My teeth also suck from years of throwing up, acid reflux, poor nutrition, and ulcers. Dental is kind of a big deal, too. I’ve also lost several fillings and have just gotten my fourth crown, because I like to apparently screw up my mouth during seizures.
I want to work. I don’t want to be at home sick. I want to get my own apartment. I want to be as self-reliant as reasonably possible, and I can’t wait 18-24 months for disability to decide what to do with me. I could do office work, but not full-time. I can’t do anything full-time right now because of the GI issues and fatigue alone. The wheelchair will mitigate the balance and coordination concerns. Commute is a nightmare in general because I can’t drive, but I could make public transit work if needed.
All the informative websites say that you don’t have to disclose a disability in the application process, but obviously if my ass rolls into an interview in a wheelchair, they’re going to know. Plus, a lot of the office jobs even state that you have to be able to bend, lift, etc. Even more want you to have a valid driver’s license! Since when was being able to legally drive, critical for being able to answer phones and file patient charts? If I were healthy, I’d have been working all along. If I’d have gone into remission, I’d be working now. The fact that I’m being forced to own up to my limitations, is the only reason I’m so stressed about all of this.
Then there are the scary thoughts. What if my seizure drugs become less effective, and I have a seizure at work? I know it wouldn’t be my fault, but it has happened before, and it’s embarrassing. What if I’m in the ER again, and they turn me black and blue? I’ll show up to work with what looks like track marks running all over my body. How will I answer questions about why I’m in a wheelchair in general, when people know I can walk? It isn’t as though I would be using it regularly, though perhaps at work I would just to avoid the awkwardness of having it around some days and not on others.
Why is disability so damn hard to get when you have multiple medical professionals insisting that you cannot and should not be working?
That’s the kicker for me. My doctors, who have treated me for years, are not comfortable with me entering the workforce again…yet the government has decided I’m too well educated and too young, to actually be disabled. Please come live in the shambles of my life, and tell me all of that again. My ex may have been a bad person, but I keep running through his final words to me, about how nobody would ever love me because I’m sick, and I worry that there was some truth behind his twisted words. What if I don’t find someone who can love me, because even though they may like the healthy version of me, that isn’t the me they’ll always get.
I spend a lot of time saying that I’m not my illness, but it is part of who I am, and I cannot deny that. An oatmeal cookie with chocolate chips, isn’t technically a chocolate chip cookie. My drive and determination may be at one level, but my actual ability to function and do the things I want, and my partner would want, may not live up to that level. The irony in this situation is that I want to go meet up with this chronic illness support group, but I can’t afford the $30/session fee…because I’m chronically ill and cannot work. Thanks universe…the one thing that could have offered support and assistance emotionally…is out of reach financially…because I’m chronically ill.
So yeah, the depression game is real right now. I feel useless, lonely, and stressed out. The things I want, are out of reach, as are a lot of the things that I need. I’m hoping I’ll find something I can do part-time, just to make me feel productive again, and to help me pay basic bills, but only time will tell if that’s attainable. Everyday I get mad at my body for letting me down. I know I should be grateful that it’s fought as hard as it has, despite the things that its been through, but I just can’t be grateful right now. Overseas they’ve done bone marrow transplant for GI Behcet’s and neuro Behcet’s patients, with 100% remission in all patients. Some patients got transplants for something else, but also had Behcet’s, and all went into remission, too. Granted it was a small pool of patients, because obviously it’s an extreme procedure, and there aren’t that many people who have Behcet’s to begin with…but I still find myself willing.
How bad is that? I want to be admitted to a hospital, have my entire immune system nuked out of my body. Probably throw up everything I’ve ever eaten since childhood…then have someone else’s cells pumped into my body in the hopes that I don’t die from secondary infections during all of it…just because it may give me a shot at normalcy again.
Maybe the question isn’t how bad is it that I want that, but rather, how bad must my current situation be, that the entire scenario actually sounds like a relief?
For now? Steroids and tons of Cell Cept…along with all of the other meds for neurological issues, sleep, and nausea. Truth be told, the most effective thing right now is medical marijuana…for literally everything. I have a strain for the depression, a strain for sleep issues, and a strain for fatigue. All have nausea benefits because I have to have that regardless.