deciphering flares #lupus

I’ve been trying to figure out what exactly a ‘flare’ means for me, specifically. I’ve been getting the Benlysta infusions since November 2012. I know for sure I’m not in remission, but getting this recent flare has made me realize that I’ve been cruising in a sort of “grey-area flare” for a while. I’m in a constant flare, but there are times where I flare worse, and then go back to the not-as-bad grey-area flare. I don’t mean to make the grey area sound easy, because it isn’t.

For lupus to be in remission, it means to not have disease activity. While my blood tests every month come back “looking good”, there is still something going on. My liver and kidney function are normal, one of my compliments is slightly off, my white count can be a little on the low side but hasn’t been cause for emergency. My Sedimentation rate (inflammation marker) is 2, which is apparently good. Last time I went to the cardiologist, there was no evidence of disease activity in my heart. I don’t have lesions on my brain. But I’m in pain all the time. I get exhausted easily. I sleep like shit. I have a migraine every day. Eating food gives me terrible heart palpitations.

I have muscle weakness and atrophy, partly from the lupus, and probably low-testosterone. But also, how am I supposed to exercise when I have a migraine every day? Not to mention the widespread pain I have everywhere else. I’m not using anything as an excuse. I come from a very athletic family, and was quite athletic myself before I was sick, and I loved the lifestyle. I do try, I really do. I miss exercise like you wouldn’t believe. I walk my dog. I carry in groceries when I can (if you’re me, that counts). I’ve dabbled in yoga and tai chi, but I haven’t been able to do anything consistently. Last time I did 10 minutes of beginner yoga, I couldn’t move for 3 days. Why? If everything in my blood work “looks good”, Why?

Traveling and being out all day or all evening is very difficult for me. I don’t even go out in the evening. Riding in a car can be pretty painful. It’s not normal for someone to be in my level of pain just from sitting in a car. It gets bad enough that I can’t concentrate. I have almost no social life because people my age just want to party or whatever. I can’t. I haven’t met anyone who is OK with how flaky I’m forced to be. I could cancel plans right up until the last minute because I never know how I’m going to feel. Something could suddenly come up, especially the headaches. They creep up out of nowhere. People get tired of me cancelling and give up. But they never make an effort to do an activity that might be easier for me, like come over to my house and watch movies or something. I’ll ask someone point-blank if it bothers them that I have Lupus,and of course they say no, because they have no balls. But actions speak louder than words and when they don’t make more of an effort to be more accommodating, that tells me how they really feel about it. I feel like a wet blanket sometimes, but I gotta do what I gotta do, so I’ve learned to deal with it.

On the rare event that I am going out to do something social, it’s really hard for me. It’s hard to come out of the Lupus closet. It’s hard to not feel well in front of a group of acquaintances. It’s hard to put on a brave face and pretend I feel well. It takes a lot of energy to keep people entertained for a couple hours, to keep a conversation going, to keep people interested in talking to you. It’s hard for me to even get ready to go out somewhere.

Another issue I deal with, being on immunosuppressants, is the constant worry about germs. I’m not a germaphobe, but it’s a legitimate concern that is always in the back of my mind when I go somewhere. I worry about strangers being sick. I worry about friends bringing me their germs. I worry about whether or not the restaurant’s table, silverware, or plates are clean enough. I worry about if the cook was sick. I worry about the restaurants food preparation. Every time I touch a surface in public I hand-sanitize, because you never know what plagued person picked their ass before they touched it. If I get sick, I have to have antibiotics, and being sick makes my immune system more active, which makes my lupus symptoms more active. If I get the flu, I have to be in the hospital.

I’d like to think that if I felt better, I’d be a really social person. Going places and meeting people are just natural interests to me. I like a change of scenery and trying new things. Being a sick person has made me stir-crazy in that respect.

That being said, I do have internet friends that are really great. I don’t know what I would do without the ability to connect to people on social media.

When I wake up in the morning, I’m extremely stiff. My stiffness lasts for hours. I can’t get up early and go anywhere until I get this morning pain under control. It takes me a long time to get going in the morning. If I leave the house before my body is ready for it, my pain gets magnified. It’s especially a problem if I wake up with a headache or I didn’t sleep well the night before. There is something to be said for a correlation between sleep deprivation and pain intensity. It usually brings my pain to the crying level. I can’t make morning doctor appointments because I can’t handle it, especially since most of my doctors are an hour away.

This is all my baseline, my “grey area”, and it has been since about 8th grade. It has slowly gotten worse since then, but all in all I’ve had the same difficulties.

Now, onto a flare. I’ve been in a flare since the beginning of February. I had a cold I couldn’t shake. It lasted for at least a week and a half, and I had to have Zithromax. I’m not sure if the cold set off the flare, or if it just was a coincidence. It sounds like a no-brainer, but there’s really no way of knowing. My flare headaches have been extremely debilitating. It occasionally has been frightening. My face is red, my chest gets red and blotchy. I run fevers, and get the chills. I also get hot flashes that are really uncomfortable. My lymph nodes get swollen and painful, so from anywhere from my throat, to my chest, to my armpits, and groin could have a swollen sore lump. My throat and armpits are usually the most common, but lately I’ve had the pain in new areas. My allover pain has been a lot worse. My eyes open in the morning and it registers and my first thought is “Holy shit”. It feels a lot like waking up with whiplash from a car accident, all over. My knees have been swollen and really painful. I lose feeling in my toes. My stomach has been an absolute mess, from cramps, to acid, to constipation, diarrhea and trying not to vomit. It’s been really hard because pain pills are hard on the stomach as it is, and so sometimes I have to deal with the pain I’m in because my stomach can’t handle one more thing that makes it upset. I’m also having issues with digestion and swallowing. Food doesn’t go down easy, then it sits in my stomach like a rock for hours. The cause is part lupus, part pill side-effects. And it’s all a drag. My eyes and mouth have been more dry, and my skin more irritated. With the hot flashes and chills I sweat profusely, and it makes my skin really chaffed and uncomfortable. I have to wear different types of clothes when this happens. I dress pretty comfortably anyway, but even more so when my skin is so irritated. I was having some muscle spasms in my neck and back that were so bad they were compressing nerves and sending pain down my arms and legs. An obvious symptom, is that I’m even more tired. I’ve been sleeping terribly. I’m up every couple hours. I’ve been peeing my brains out in the middle of the night. I’m lucky if I can sleep past 5-6am. It takes me an eternity to fall asleep. Cumulatively I probably get about 4-5 hours. Since having lupus, my cognitive abilities have been for beans, but that gets worse with a flare too. My nasal congestion gets bad enough to wake me up in a panic. It’s hard to tell if it’s allergies or inflammation. I get random sore throats. My lungs hurt. Sometimes it feels like I’m about to get a cold but then I never do. I’m even more sensitive to the sun. I break out and rashes and get an overall “sick” feeling. There was a time when being in the sun felt nice, but it has since turned into a ‘nails-on-a-chalkboard’ feeling. The sun causes lupus to be more active, so I have to avoid it if I can help it. I tend to “Irish tan” anyway, so it’s not a big deal to avoid the sun. But I miss when it felt nice.

Despite all these terrible things going on, I still don’t “look like a sick person”. I don’t play up my sickness. I’m pretty quiet about it. I’m not ashamed of it but I don’t want ‘lupus’ to be the only thing people associate with me. I’d like to be known as Jill the artist/musician/nice person too. It’s hard to find the delicate balance between being seen as “that chick with lupus” and just having a general social understanding and acceptance of my limitations.

This flare has been influential enough that I am stopping my Benlysta, because it is obvious that it’s not helping. I was flaring before this months infusion, and I continued to flare after when theoretically I should have had some relief. Blood work doesn’t always accurately reflect how the lupus is effecting someone. I had prednisone last week, which was an awful experience, and didn’t pull me out of flare mode. It’s a great possibility that I have vasculitis. It would explain nearly everything. But getting the test approved by my insurance has been a nightmare. The sooner I get the test, the sooner I know which course of treatment to take, and hopefully the sooner I start to feel better. Someone told me Rituxan was the miracle drug for them, and it put them in remission. I’m afraid to be that hopeful, but I’m anxious for everything to come together. The possibility of remission is amazing and distant. The idea doesn’t even seem real to me. I’m quite used to being a sick person by now. I feel too fragile to allow myself to be teased by the idea of not being a sick person. I’m still holding on to the idea of “when I get better” though. I have so many plans for “when I get better”. Daydreaming about it is the reason I get up every day and fight this shit.

I feel like every basic human function has been disrupted. Not just by the flare, but during the grey-area as well. I’m in a constant state of being in pain or being uncomfortable, or both, in any given part of my body. I have pain pills, and stomach pills, sleep-aids, and steroids, but they come with a lot of side-effects. Taking a pill isn’t so much relief as it is trading a symptom for a side-effect. I have to choose my battles and decide which is worse.

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5 Comments

  1. I’m so sorry that you are forced to deal with symptoms vs. side effects. I am too…I’m another one of those “but you don’t look sick” people. I’m even with you on the “bringing in the groceries”. I’m either too weak to carry more than two bags in, or flat exhausted if I do. I really hope medical science is able to find some relief for you. Musician? What do you play? Or sing? I am too, but I find it’s less painful for me to play an instrument than it is to sing. It always leads to a headache.

  2. Hey,
    Some of what you are describing (minus obvious Lupus stuff) sounds exactly like fibromyalgia. You can have fibro AND Lupus.
    It’s not just muscle pain. It’s all the stuff you are describing. Especially when your blood tests are looking good. It’s hard to have something that is not quantifiable. I know because I have it.
    Have you read The Spoon Theory? I think I asked already. Haha…fibro. memory is for shit.
    Anyway, I can relate to most of what you said. I know it could be the vasculitis and I am sure you know about fibro. I just thought I’d say that just in case.
    I am glad you are sharing this. It helps so many people to know they are not alone. I don’t have Lupus but I have high ANA and fibro, So I can relate to the half of this stuff. Especially the social stuff. It is so hard and people just don’t get it. I don’t have a single friend. I have aquaintences and family.
    BTW, I draw, and play cello though I am a beginner.
    You should post some of your art!
    Back to the fun stuff.
    I am not my disease but I am sick of explaining that to people. They just ignore it when I tell them I can’t do stuff. I can do stuff sometimes though and I am very stubborn and push through the pain,weakness and fatigue sometimes when it’s not so bad.
    But the thing is I never know when that is. It’s hard when you cannot predict things. x+y doesn’t always = z ya know?
    Well this isn’t my blog so …
    Thanks again.
    Your sense of humor, intelligence and genuine feeling come through in your writing.
    Your friends are missing out on a great person!
    Hope you get your vasculitis PET scan (?) soon and they sort this out and get you some relief!

    • I’ve been down the fibro road. It’s actually what they dx me with before the lupus. That particular Dr never bothered to test me for anything, she just handed me some cymbalta and shoved me out the door. I was recently checked for tender points and I don’t have any. I know there is probably something else going on, either by itself or secondary to the lupus. I have read the spoon theory, I actually found it before the lupus dx, I was first diagnosed with adrenal insufficiency (addison’s disease) and it really applies to a lot of illnesses I think. Lupus is so weird. I know people can have high ANA but not have active lupus. I can’t wrap my head around it sometimes. According to my dr I have a solid lupus diagnosis because I’ve tested positive for all the auto-antibodies that it creates.
      I’d like to do an art blog, I think I wrote one a while back with a couple things in it. I draw and paint. I had to give up colored pencils though because they require too much ‘elbow grease’ to put down color and it makes my joints hurt. I started using copic markers, they’re pricey but a worthy investment. They have made applying color so much easier.
      I think writing my blog has made dealing with the lack of a social life easier. My mom/doctor always wanted me to keep a medical journal, but I just didn’t feel like it, I didn’t feel like focusing on my health that much. But when I decided to make it a blog with the purpose of other people reading it, it became easier because the goal was different. So in a way writing makes me feel like I’m talking all this stuff out to someone. Getting comments and knowing people read it help too, so thanks 😀
      I’m glad you appreciate my writing style. I never know how far to take the smartass stuff, because I don’t want to offend anyone, but at the same time I don’t want to candy coat stuff. It might not work for everyone but I’ve gotten good feedback, so might as well keep at it! 🙂 Hope you have some good days ahead of you

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