My doctor called me Wednesday to tell me my white blood cell count is low, and she wants to draw blood in a couple weeks to see if it’s gone back up. It’s at .9 right now (translates to 900, and normal range is within 4,500 to 10,000 cells/mcL, please correct me if I’m wrong). It wasn’t unusual for my WBC count to dip a little low while on the Benlysta, so it’s not surprising to me that the Rituxan could be doing the same. In the meantime, I can’t really spend time in crowds. My family is taking extra precautions in cleanliness when coming home from public places. I have to be sure to use Neosporin every time I get a cut, and I can’t eat uncooked fruits and vegetables.
I have some yellow spots in my throat for no reason. I’ve had it once before. They hurt. It’s probably some kind of cold virus/sore throat-type-thing that I wouldn’t normally be susceptible to if my WBC count wasn’t low. Last time, they just went away without having to go to the doctor. I’m hopeful it will clear itself up again. I don’t want to go to the doctor and be around more sick people. I feel ‘fine’ otherwise, I don’t feel like I have a cold.
I’m still running the same fevers I’ve had the past couple months. It’s been pretty obnoxious. Ibuprofen and Tylenol help, but not 100%. I can’t stand to feel the slightest bit of warm air without getting hot and sweaty. But at the same time, I’ll have a couple hours where I have the chills and I can’t get warm. I change my clothes a couple times a day to try to accommodate my body temperature.
My underarms aren’t irritated anymore for the time being. I haven’t had the burning rash on my neck anymore, either. My skin still seems kind of irritated and sensitive overall, but there is no rash. I am sun-sensitive as all people with lupus are, but I feel like it’s been more bothersome lately. I absolutely can’t stand the feeling of the sun on me. It makes me feel sick. It makes my pain so much worse.
I’m having a hard time getting through the day energy-wise. By the time the evening rolls around, I’m too tired to occupy myself, and I get really bored. I’m not much of a ‘nap person’, I always get a headache from naps, and sleeping during the day doesn’t help my fever. I try to tough it out until about 10pm so I am still sleeping my normal hours. It’s been hard because I’m losing sleep between 4am-and 7am because of headaches, body aches, or stomach aches. They like to get me up early, and by the time I can figure out what to do for it, by the time the medicine kicks in, I’m not tired enough to go back to sleep. I’m getting 5-6 hours of sleep at the most.
My urinalysis came back clean. I’m pretty happy about that. So it’s just the Rituxan causing burning when I pee. I’m actually starting to feel better regarding that as well. I’m obviously not very shy about talking about it, am I?
The headaches are still bad. My neck and back have been pretty tense too. I wish I could get a massage but the increased blood flow to the area makes my head hurt more.
My blood pressure has also been a little high. Not sure what that’s about. It’s pretty unusual for me. I’ve been waking up to heart palpitations. Whenever I eat a meal I get them too, even though I eat a low-salt/preservative-free diet. Just another bullshit symptom, I guess.
My brain is still in a terrible fog. It let up a little today, which is why I’m able to write. Yesterday was really bad. It gets so bad sometimes I feel like I can’t do anything. Everything becomes really overwhelming. Sometimes it makes me want to cry because I just feel so ‘all over the place’.
I guess I’ve just been sad lately. I’m tired of the ‘daily grind’. I’m bored as hell because I don’t usually feel well enough to occupy myself. I feel like Bill Murray in Groundhog Day. I’m just trying to hang in there until the Rituxan does its thing.
It hasn’t helped that my internet connection is shit because of the World Cup breaking internet streaming records. Yay sports, but I’ll be glad when it’s done because I miss writing and talking to people. The internet is my social life. It is for a lot of sick people. I can’t hang out at bars, or whatever people do these days, so I hang out on Facebook. It helps me feel a little more normal. As a rule, people don’t make accommodations for me so I can hang out with them. My health gets in the way of plans and no one really offers to do activities that would be easier for me, they just leave me out instead out of laziness. Maybe social media seems trivial or irritating to other people, but I’d be sad without it. I can still talk to people and not have to worry about ‘making plans’ or whatever. I’m not afraid to admit I’m lonely, but I’m also not shy about pointing out that people suck, and most of the time they disappoint me, and that dealing with being lonely is easier than disappointment. It’s been a conflicting position to be in.