It’s been a while! I can’t remember the last time I talked about my health on the blog so I thought I would give an update on all things chronic pain, brain tumors, and disability.
What a year, huh? Especially when it comes to health. We’re still in a global pandemic that is only getting worse as we move into winter. People are sick of quarantining and wearing masks, leading to recklessness and stupidity. Through it all, I’ve surprisingly kept it all together.
If you’re new here, I suffer from chronic pain—fibromyalgia, chronic headaches and migraines, a brain tumor, PCOS, sleep issues, and stomach problems. I technically have had chronic pain since I was 11, but everything came to ahead—literally—at the end of ’08. I had brain surgery in ’15 to remove a tumor and then went through radiation a few years later. BTW residual brain tumor is doing good! I now only have to get it checked every six months and there hasn’t been any major changes, but that doesn’t mean I don’t feel like shit on the regular.
Because of my health mess I haven’t been able to work since June ’16. Once I moved to Florida, I went through the process of applying for disability. Let me tell you, it sucks. I’ve never filled out more paperwork in my life. The whole process is so grueling; you’re basically automatically denied on the first try. What followed were months and months of waiting; I got to a point where I thought I was completely forgotten about and nothing was ever going to happen. After a year and half, I got a hearing date. Because of Covid, it was done over the phone and my lawyer had to make the case as to why I can’t work. We didn’t have very high hopes because I’m so young, but a few weeks after my hearing I was officially declared disabled. I never thought I would be so happy to be claimed disabled. This means I get monthly financial assistance as well as Medicare. It is such a relief to get this kind of help, allowing me to focus on getting out of Florida.
I don’t think I would have stuck it out if it wasn’t for the lawyers my mom and I were working with. They were the ones badgering my doctors and prying for information. They’ve also been so helpful as I’m figuring out Medicare. There’s so much about health insurance that I don’t understand and their guidance has been very much appreciated.
The week before we went into lockdown I ended up having sinus surgery. With my headaches I’ve always had chronic sinusitis. The different sinus passages in my nose and face are narrow and get clogged really easily. I had this same surgery in ‘16 when I still lived in LA. It’s a pretty easy surgery, not much of a recovery—just some residual pain and I had to rinse my nose with saline solution every four hours. My only problem was I developed nasal polyps that blocked my sinus passages again. Three or four rounds of antibiotics/steroids and eight months later, still quarantined and still with a plugged up nose. My two options are: take a medication where I have to give myself an injection every other week for the next 3-5 years, or try another surgery.
Fun fact! My biggest fear is needles. Just talking about shots, needles, or blood gives me the chills. I just know my mental health would take a major dive if I had to anticipate a shot twice a month for so many years. So right now, I’m just not doing anything about anything, minding my own business hoping everything just goes away. Is this the best plan? No, probably not.
Growing up, I was the best sleeper. I was out before my head even hit the pillow. I never did all nighters in high school or college because I valued my sleep way too much. However the last few years, I have had the hardest time falling asleep. One major component to fibromyalgia is chronic fatigue—it doesn’t matter how much you sleep, you never feel rested. For me, my body is so past the point of exhausted that I can’t turn my brain off and sleep. Most nights I will fall asleep sometime between 3-4am, wake up around 9:30am, and then accidentally have a mid-morning nap. sometimes I’ll go the whole night without any sleep. It just makes my pain, my cognitive processing, and my mental health worse.
Okay I think that’s enough of my rambling. Thank you for letting my vent and update you on all things health.