THIS is Lupus

THIS is Lupus

Apr 16

I had a few good days. But the last 2 days have just been evil. Normally I don’t post when I feel so bad because it takes so much energy and everything hurts, but I wanted to make a very honest post today.

Here I am. Oh yeah, and my cat Squirrel is next to me.

Face Of Lupus

It’s 5:09 PM. I look like shit. I’m still in my pajamas (at least they’re cute?), I haven’t brushed my hair or my teeth, I haven’t showered (the eyeliner is still on from last night), I haven’t done much of anything at all except watch recorded shows about meteorites and asteroids. I feel like complete shit.

Physical shit: My hands hurt. They always hurt, but today they hurt a lot. I’m typing slowly. My tends in my forearms feel very tight, like someone is squeezing my arms. I have peripheral neuropathy, so my nerves hurt. I can feel them. It feels like an uncomfortable burning in my wrists and branches out into my arms. Now that I’ve typed this little bit, my knuckles are turning red.  My feet hurt. I walked around a bit last night and now I’m paying the price. I have a pain below my left collarbone that feels like I was jabbed all night long. The left side of my back is super sore and tender as well, even though I haven’t done any sort of activity to warrant this. I breathe, it hurts. My eyesight is terrible. This probably isn’t lupus-related, but I have a bad astigmatism and contacts don’t correct it, so everything is always blurry and it really pisses me off. There are red sores on my scalp. I feel so tired. My nails can’t grow without splitting and I get bad hangnails. My hands are shaky.

Shit on my mind: I know that I have a chronic disease and most days it doesn’t bother me so much, but today it’s really getting to me. I will always have lupus. It will always affect me negatively. Most days I can just laugh about it to make myself and others feel better, but deep down I feel like a useless piece of crap. I haven’t had a job in 2 months and I’m scared if I find something I think I might be able to do that I’ll fail at it due to being sick. I don’t have insurance and I need a lot of blood work done. I’ve had very high cholesterol in the past (lupus can cause this), and I was on meds for it to bring it down but that was over a year ago. I’m sure my cholesterol is super high again. I haven’t been to the gyno in a year and I’ve had many abnormal pap smears in the past (lupus can cause this if you have a certain condition), so there’s a fairly good chance they’re abnormal again and I just don’t know because I can’t afford to get checked out. I’ll probably get cancer. I live with my boyfriend and he’s nice enough to let me live with him for free, but I’m supposed to keep the house clean (which I actually like doing), but my hands hurt too much to hold the vacuum cleaner to suck up cat hair. I can’t open a can of soda without having excruciating pain.

I’m out of Vicodin. At this point I’d smoke weed again for pain relief even though I really hate smoking. But that costs too much money, too. I feel doomed. I feel useless and pathetic and scared and I’m angry that I have to go through this.

So, that’s Lupus for me today.

2 comments

  1. It sucks and I am so sorry. My daughter and I have both been “flaring” w/periods at the same time. Sucks.
    I am sorry you hurt, but glad that you are honest about it.
    Try not to live in your head to much. Dont think about what you could, should, and would be doing. Don’t think about not having it. Its there. It sucks, but there it is.
    Free clinic is good.
    I felt like me or my daughter could have written this. She is turning 16. Having to HS, because she missed to much school. Losing her invulnerablity has been the hardest. I imagine it is hard for you too.
    I am still in Jammies, havent looked in a mirror, nor do I plan to. It sucks and I am sorry. So proud you could put it down in words. This helps. Bless your pea picken little heart. You are in my thoughts.

Leave a Reply