It was a dark and stormy night, day, week, month, year …

20150525_132400_2I haven’t written much lately. There are lots of behind-the-scenes things going on, including the start of the disability-filing process. It has been extremely depressing filling out the papers and answering questions about my health and worth—like I don’t battle with these questions everyday all by myself. Writing out the details on an official document is a painful smack in the face. It’s a reminder of all the chaos I’ve gone through since being diagnosed with myasthenia gravis (MG) three years ago.

Today has been a battle against a nasty MG flare. The day started out okay. The weather isn’t even too bad (humidity ~47%, temperature in the 80s). I had to go to the grocery store for a couple of items earlier today. As I walked through the store for the second item, the dreaded heavy, lead-filled legs took over. I was struck with fear that I was going to end up falling. I had an immediate flashback to May 2013 when I fell and ended up breaking two toes! I had no choice but to walk slowly like I was trying to sneak up on someone. I made it to the checkout lane and leaned on the counter. I was grateful, for once, that the person in front of me was taking forever with checking out. It gave me time to rest before attempting to walk to my car, which seemed to be five miles away.

I made it to my car and sat for quite a while to catch my breath and collect myself for the drive home. I made it home and immediately crawled into bed. I slept for three hours! I felt better when I woke up until I started moving around and then I started going downhill again. Many myasthenics in this situation would check in with their neurologist to share their flares or see if there’s anything more that can be done to help minimize the number of episodes—I’ve been having more than my fair share of flares for several weeks now. Unfortunately, I haven’t been able to see my neurologist since October/November last year. I was scheduled for a six-month followup in April but I’ve had to keep postponing my appointment due to lack of funds to pay for a doctor visit. I’m supposed to have labs done every four to six weeks since I’m on Imuran (azathioprine) and I have one of the world’s most sensitive systems. I’ve not been able to have any labs done since January of this year due to lack of funds. I had to drop my so-called “affordable insurance” because I can’t pay for it. I don’t have 10 kids from as many different men and I’m a legal citizen so I have to pay more for my insurance and receive zero help from The System. Oh, and let’s not forget that I’ll be punished by said System for not being covered.

I’m still trying to make a go at building a business that would allow me to control my hours, allowing me the flexibility to stop and rest when I need to. It’s taking way longer than I hoped it would take thanks to unpredictable flares and not having the help I need when I need it. I’m trying my best to not let it all get to me, but I have to admit I’ve had some mighty meltdowns over the last few months—the latest one yesterday morning.

I’ve been doing some small contract work in my career field. I enjoy it but it isn’t paying nearly enough to help me pay all the bills. Yes, I’ve cut out all miscellaneous expenses. I don’t have cable. I don’t have a subscription to Netflix or any other such services. I have the cheapest Internet plan. I don’t go out. I buy only what is actually needed in groceries. I took myself off of my anti-arrhythmia meds since they were too expensive even on insurance to maintain (no, my heart doctor doesn’t know this). I have a prescription discount card, which cut the price of my Imuran in ~ half, but it doesn’t cut the other medicine enough for me to be able to pay for it at this time.

I must keep some sort of roof over my head. I’m in a “cheap” apartment—well, cheap for my city. I’m still paying on my car. I’ve fallen way behind on several bills and I have zero ability to negotiate with the collectors since I’m not bringing in enough to pay them and maintain the absolute necessities.

With all of that said, I’m mentally gearing up for being denied disability since it seems to be the norm that people are turned down the first time. Also, since I’m still doing some work, they will not see me as disabled. It’s quite the challenge having a disability that, if you work, requires an extremely flexible schedule and limited tasks that aggravate my muscles. That type of job, as far as I know, doesn’t exist under any known employers, which is why I’m trying to create the setting for myself. My mind is too active to allow me to curl up in a ball and live in someone’s spare bedroom until I die. I have to make this work one way or another. I’m willing to die trying to set up the most ideal conditions for myself. What can I say? I’m stubborn.