It’s tough to write when you’re sick.
It’s not the constant pain, or crushing exhaustion–which are limiting on their own and make me want to do nothing but lie in bed–but the horrible muddled brain that comes along with it. The sitting, and staring, not comprehending the words of your outline, and being unable to do anything except look at that blinking cursor; wishing you could think of anything except how rundown you feel. In fact, this post is an effort to shake the cobwebs from my brain, and I still feel like I’m doing it poorly.
Instead I’m binge watching Fuller House because it’s the only thing my daughter will allow on the TV that isn’t cat videos on YouTube. [She calls it the “Babysitter Show”] And despite the fact that the show is aimed at me, a person who grew up watching Full House, I kind of hate myself for liking it the little bit that I do. [But at least it’s not the same cat videos over, and over, and over again.]
It’s also difficult to write through depression, which I’ve struggled with off and on for a good portion of my life. Fortunately it wasn’t so bad that I needed medication, but it’s tough to avoid when you have a chronic illness. [It pretty much comes with the territory when you’re in near-constant pain.] And not only that, but I have several injuries from accidents before this happened, so basically I’m a mess of a human being. The worst part though, is that it hasn’t stopped. I’ve lost weight this past year. A lot of weight. I originally thought it was from stress–losing our house and having to be separated from my husband for two and a half months was pretty stressful. Add in not eating much and deciding to quit soda, and you can see where I thought the weight I lost was just from those things. It didn’t seem like a problem until my husband and I were able to be together again, after we got into our new place. I fell back into old habits: Soda. Fast food. Chocolate. But I still kept losing weight. In denial that anything was wrong–and partially in defiance of it–I started eating like an idiot.
I’m supposed to eat a ridiculous amount of salt because of my stupidly low blood pressure. [So low that I pass out if I’m not eating enough salt.] I’ve also discovered that sometimes I need to eat red meat to feel better, on top of the salt intake. So this turned into an excuse to eat out–a lot. Burgers, Steaks, Fries… I have low cholesterol too, so I thought a little indulgence here and there couldn’t hurt. Until it turned into three times a week, and still my pants began to fall off of me. Being overweight most of my life, I didn’t want to complain–after all, who would believe that unintended weight loss was bad? The people I did tell congratulated me or said things like, “Oh, you look so good!” Any doctors I had seen for my back pain [from a car accident several years ago] listed weight loss as something that would help me. Unfortunately, the symptoms of my [yet undiagnosed] autoimmune disease were getting worse as the pounds melted away, which I wasn’t surprised at. While I was pregnant with [and after I had] my daughter, I lost quite a bit of weight. My symptoms flared up and I gained weight on purpose to get back to my “normal”. Despite sounding like a crazy idea, it worked.
The weird thing is that I wasn’t officially diagnosed with anything yet, I just knew I felt better when I was heavier. It wasn’t until a year and a half ago that I was finally diagnosed with an autoimmune disease. [And it’s vile. I’m not going to even name it, because in addition to being painful, I’m that embarrassed by its symptoms. Sorry.]
But that was a bit of a digression. Some time after the holidays I started feeling really run down, realized I was being an idiot, and began eating better. Cut the fast food back to once a week [sometimes two–not gonna lie] and cut the soda back to only when eating out. I broke a tooth on Superbowl Sunday, and was given antibiotics so it wouldn’t get infected before we could extract it. A week later, I ended up with a horrific rash all over my body. Went to the ER, where they thought it was chicken pox. I assured them it wasn’t, as I’ve had both it and shingles before. Twice. I also found out that in the past ten months, I’ve lost over forty pounds. Without trying. Despite cramming myself full of junk.
They finally did a blood draw and determined it was an allergic reaction to the antibiotic. Pulled me off that and put me on Prednisone. No qualms from me there–I love Prednisone. I hope to have it prescribed to me the same way a Vicodin addict hopes for painkillers. It is the only way I get any relief from my chronic suffering. [Because it suppresses the immune system.] After three days on the Prednisone I felt absolutely amazing. My rash was gone, my bloat vanished [the bloat I hadn’t realized I had], and the symptoms of my chronic illness were in regression! I had the tooth yanked at the beginning of March, and tried to take a picture of my swollen face to send to my mom a few hours after the procedure. But I didn’t look swollen–at all. Yay for Prednisone!
A few days later I ran out of medicine and started to feel shitty again–headache, lightheaded, fatigued. Upped my salt intake, but to no avail. Now I noticed a new symptom: my heart felt like it was going to leap out of my chest. All the time. I started monitoring my heart rate with an app on my phone; 80-ish beats per minute at rest, over 100 with mild activity. Soon even walking across the room left me breathless. [and with a heart rate of 120-140 bpm.] One night a week or so ago I felt a crushing pressure in my chest, and my husband convinced me to go to the ER.
After they determined I wasn’t having a heart attack and didn’t have a blood clot, they recommended that I see a cardiologist and turned me loose. The problem with that is that since my husband switched jobs, I don’t have health insurance. I called around and was put on a waiting list at the only low-cost provider in town–a five month long waiting list.
Part of me wonders if I’ll be around in five months. Part of my husband wondered if I’d be around in five months also, and he told me that we were going to dig into our savings and have me see a specialist. I protested. We were saving for a new car–ours is on its last legs and should probably just be given a viking funeral. He insists.
He’s right. I’m used to putting things before myself: my daughter, my husband, my pets, the car–even housework. [I can’t tell you how many times I’ve thrown out my back vacuuming. I am a garbage person.] Now I’m starting to get nauseated after I eat, no matter what I consume. It’s pretty awful. I’m tempted to stop eating altogether. If you follow my Instagram, you know I love to cook, [and eat!] so this is terrible.
I’m at a loss. I have no idea what my body is doing any more.
So this coming up week, I’m going to see an Internist. I have no idea how much it’s going to cost. This scares the crap out of me. But at the same time, I’m more afraid of dying. Tachycardia [an increased heart rate] will just kill your ass over time. Within five years your chances of dying go up something like 75% statistically. I don’t want to spend five years feeling like this. I don’t want to die either. Period. End of story.
I’m worried it’s more complications from my autoimmune disease. I’m also worried it might be cancer. [My whole family has had it, and I found out I grew up in a secret nuclear fall out zone, so it’s not farfetched.] I’m worried it’s another autoimmune thing, because they travel in groups. I’m worried about a lot of things. I always have been. I’m just… not used to worrying about myself.
You’re probably thinking that’s how I’m going to end this; that if I had thought of myself sooner, I wouldn’t be so sick. Real life doesn’t work that way though.
The truth is that I would have spent a lot of money that we couldn’t afford to spend, on a lot of doctors, who would have dismissed my symptoms because I’m fat. It’s happened in the past, and I’m also worried it’s going to happen next week, despite telling them about all the weight I’ve lost. After I was diagnosed with my autoimmune disease, I told my primary doctor about it, and she laughed at me. Told me I couldn’t possibly have that because she’d never heard of it showing up where it affects me! She told me to lose weight to fix it. I was embarrassed and furious. Firstly, I knew that losing weight exacerbated it; secondly, it was common for it to appear where it affected me; and finally, this family practitioner was dismissing the diagnosis of someone who specialized in autoimmune diseases! In some ways, I’m not sorry we lost our insurance because I never have to see or pay her condescending face again.
There is no happy ending, or simple moral to this story. Just fear and uncertainty.
Real life sucks like that.
P.S: Normally I would have written something like this in about two hours, but it took me the entire day to finish it due to brain fog. Ugh. Wish me luck with my appointment next week! I’d love to start feeling better and get back to writing.