One Week Post-Rituxan Completion #lupus

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.

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2 Comments

  1. That was a speedy read. You write so well, I feel like you’re speaking to me. Maybe your reality has some commonality with mine, but for other reasons. And to think I went thru lots of these symptoms as the result of a loooong withdrawl from opiates – the chills, violent temperature changes, time ticking by so slow – like I’m watching the world continue on without me … bouts of deep sobbing over the smallest thought, and not having the energy to ‘occupy myself’, which I know would’ve made a big difference in my perception of time, but could not do a thing. I play the guitar rather well – I can do a pretty close John Frusciante, but that’s because his solo LPs are what pulled me thru to the other side – latest record he shot into space on a tiny little state lit with an app you could download and listen to when it would come in orbital range. I swear it was a different experience. The guitar work at the end if ‘Stages’ had me .. Once Again .. On my knees balling my eyes out, but I think it was such a mix of emotions wrapped up in the layers of sonic beauty that it was both elation and devastation. What an ass. (grin).
    During that awful time I couldn’t play. I could get up the motivation to even pick a guitar up. I had to wait and the wait did pay off.
    I’m not a writer of reality – can you tell? But I really wish I was. I’d never write like this on my blog. I think when I started following you I conveyed that I now have neuropathy (conceptual diagnosis at best) and am in incredible pain. Since then things have changed and I am literally falling apart physically from the outside in. No medication is really helping. Relentless Chronic Pain is something to be shared with others who know it.
    My friends in SF, CA don’t understand and I don’t like to explain why I can’t take the few hour drive to have fun, go into LightRail studios and lay down improvised tracks – I’m a drummer as well and can lead a session very well from behind the trap, but I can’t GET there. last week I mentioned something about Metallica (can’t stand em) and in passing it’s always, “yea, I had to let that Hetfield guy in cause we were locked up for the night and he had no key. I thought he was a cop till I opened the door. He’s really kinda stupid”… so I’m missing out on the success of my friends who have been at this for years and finally have the top recording studio in the city. I miss them all is much. I had to limit Facebook time out of frustration. So it’s Instagram and tumblr — you know, less real-time, less personal. At least my friend who I used to see as somewhat of a heroic figure texts me everyday regardless of what’s up.

    I don’t know why I just spilled all that on you. I’m sorry if it wasn’t cool, especially since I’m all over the place, but reading your blog got me in amazement mode. It means a lot to me that you share your life and it makes me think that there’s others out there that you can affect the same as me. It’s a good thing. I don’t feel quite so alone .. I didn’t even get into where I’m at, diagnosis, or anything that would make this all congeal, but if you’ve read this far … I’m impressed. I have some suggestions, but then I know that’s not why you write – maybe a Facebook friend request would be cool, but I’m weening from it.
    I hope the meds work. I really do. And I hope you can slowly get out if that’s what you desire. I won’t forget this — not for a long time.
    – Ryan Sloan (facebook.com/fixthefernback/)

  2. I appreciate you taking the time to comment back. When I post something out into cyberspace, I know people read it, but I am not always aware that they were able to take anything from it, which is my hope when I write. I tend not to sensor myself, even if it means using language that other people may find offensive (personally I think they need to get over it) or writing down thoughts for which I’ll be judged. but I try to be real and write as if I were telling someone one-on-one, no candy-coating, no BS, because in the long-run that doesn’t do anyone any good. I don’t always write from a positive perspective, because I’m not always feeling positive. I’m hopeful that it shows people that they don’t always have to keep up the “sunshine and rainbows” when they’re fighting a battle.
    I play guitar, and a little mandolin (mostly celtic stuff). I am unable to play as much as I’d like, if at all, because of the pain in my hands, and because my memory and focus troubles keep me from remembering anything about music theory. I played in band in elementary school and could sight-read and all that, but I have since lost it, and that was a while back anyway. I was always hopeful it would be like ‘muscle memory’ and it would all just suddenly come back one day, still nothing yet. I’d like to give the drums a go if I ever feel up to it. I actually think it could be the instrument I was meant to play, it just seems to make more sense to me for some reason.
    As far as listening to music goes, it has gotten me through the hard stuff. When my brain allows a clear thought or two, I started writing a music blog, too. I find writing very therapeutic, which is still somewhat strange to me considering public school made me hate writing at one time. I’m always open to feedback on here. If you don’t already blog I recommend it. Keep up with the music.

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