Humira and stuff #lupus

I took a break from writing, and wordpress has a whole new interface. I really wish websites would stop changing things around. It’s really annoying to have to re-learn how to use something all the time.

I’ve been on the Humira for a little over a month. I was a week late for my last injection because of insurance/pharmacy and because I didn’t ask my doctor for another sample when I should have. I felt some of my stomach pain come back. After I did another shot it seemed to get better again.  I’ve felt more tired while on Humira, like “too tired to shower” tired. I still manage to shower, but it’s been exhausting. When I get up in the morning I feel like I didn’t sleep, and I’m dragging ass all day. I’m hoping it’s just an adjustment period.

My focus has been horrible. I think that’s why I didn’t write for a while. I feel like I don’t have two thoughts to rub together. I could stare at the wall and be fine with it.

My Raynaud’s is in a flare. I don’t really know what made it go away, to be honest. I think between it being 80 degrees outside and having a fever all the time, my hands and feet just weren’t getting spasms. It’s been a bit cold here lately. Humira has made me have less fevers, and sometimes the chills, so my fingers and toes are back to being painfully numb and blue.

My period was late this month. I noticed more recently that it seems to happen every 30 days now instead of every 28, but I probably didn’t get it until the 33rd day. I figured I was going to skip one, but then it showed up. I’ve been headachey but no where near what it was even a year ago. Tylenol actually helps, which is a first for me.

My body temperature has been a roller coaster. I’m either too hot or freezing, I can’t seem to get comfortable. I get the shivers randomly, which is a lot of fun for my muscles. I am enjoying the break from being to hot all the time, but being cold makes my body hurt too. The return of the Raynaud’s has made my hands and feet ache a lot. My joints are really stiff. I’ve been getting joint pain in my jaw and my neck is giving me some vertigo again.

Everything checks out at the cardiologist and pulmonologist. My rheumatologist said that I am most likely dealing with vasculopathy, which is a new area of study in the medical world. It’s basically like having raynaud’s in your whole body. Your blood vessels spasm and you get short of breath or your heart pounds. When it happens in your brain it gives you the brain fog. He wanted me to look into a clinic that teaches breathing exercises that can temporarily un-spasm your blood vessels. Such places would be minfulness or biofeedback, and can be covered by insurance. I’m trying to find a place that isn’t shady, since it’s alternative medicine. It’s hard to find anything in my county that’s not a sham. If I can’t find something I’ll probably look into books or dvds on breathing exercises, or something. I don’t know.

The vasculopathy is difficult because every time I do something that changes my blood pressure, like eating, or standing up, or moving around, my chest gets really tight. It’s really uncomfortable. I feel like I can’t get any air. It’s probably also the cause of my nighttime breathing problems, which are made worse by certain medications.

My rheumatologist did show me one breathing exercise. You have to do it for 3 minutes, which is really tiring. I’m gonna have to work my way up to 3 minutes. To say it’s aerobic would be redundant, but it just is. It’s a lot of work to breathe weird for 3 minutes. I’m gonna keep trying. It gives me a headache but since my headaches aren’t so bad these days, I’d rather deal with that then feel like I can’t breathe.

The humira shots hurt a lot. I’m using the injector pen. I tried icing my leg first, that seemed to help. I’m glad they’re twice a month and not every week. I could switch to syringes but I like the simplicity of the auto injector I guess.

I’ve been pretty tired but I’ve been staying up late. It’s like I’m too tired to go to bed. Lame.

My cat yells at me every night because bed time is her favorite time.