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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Jill, professional thumb-twiddler. #lupus

I think the hardest thing about being sick is the waiting. I’m always waiting for something. And whatever it is usually takes an eternity.

The medical board reviewing my spect scan case denied it again, even though my neurologist went in there armed with plenty of evidence that it needs to be done. He was really surprised that it got denied. He even told me he has some evidence that my Adrenal insufficiency (Addison’s) is caused by my lupus. I got a letter in the mail stating that “Lupus is a disease of soft tissue and joints” as their reasoning for deeming it medically unnecessary. Actually, lupus can effect any part of the body, even the brain. There is a form of Lupus called Central Nervous System (CNS) Lupus in which the antibodies attack the brain and spine, and has been suspected in my case more than once. I don’t appreciate the fact that the doctor that reviewed my case and denied it is probably a doctor appointed by the insurance company, and they have absolutely no clue what they’re talking about.

My rheumatologist is going to have to fight with them about it now. I wonder how many months that will take…

In the mean time, I’m worried about everything, and I’m tired of being in pain.

I’ve been frustrated with my current rheumatologist because I sometimes feel like I’m not being heard, and I also feel like we’re not getting anywhere. I went to a different rheumatologist for a second opinion yesterday.

She was nice enough, and really young. She took a full health history, accidentally deleted it on her laptop, and did it all over again, and then the original reappeared for some reason. She insisted that vasculitis can only be diagnosed by spinal tap, and that spect scans are ‘experimental.’ I told her about my Addison’s Disease, and I got a feeling she didn’t know what I was talking about until I said “adrenal insufficiency” and mentioned how I can’t be on prednisone long-term because of it.

I talked to her about my experience with my current rheumatologist and getting the Benlysta infusions, and she asked me why I went to see a doctor so far away from my house (I get my infusions about an hour away), and I told her that the doctors in town were like ‘farmhouse doctors’ that don’t have much knowledge outside of your garden-variety illnesses. I’m exotic and they haven’t been able to help me, and the closer I get to a big city, the more educated and innovative the doctors are, especially at the universities. She was mildy offended by my ‘farmhouse’ comment for some reason. It wasn’t aimed at her. But I didn’t know how else to explain it. Doctors in a smaller city/town just don’t know how to deal with someone like me. I hear a lot of “I don’t know what to do with you”, or “what’s that?” or “we don’t do that type of treatment/test here”. They don’t do Benlysta infusions in my town. The one rheumatologist they have here refused to treat me with anything besides ibuprofen because there “wasn’t enough research”. I wasn’t going to sit around and wait until I was pissing blood to go to a real doctor, and I didn’t care if it was a far drive. I wanted the best treatment as soon as possible so I wouldn’t get organ damage.

Then she suddenly asked me “What about the abuse?” reading off some file on her computer. I was like “what abuse?” And she started talking about physical and sexual abuse. She wasn’t reading the correct file or something, because I’ve never been abused, and even if I was I don’t think I’d put it on a doctor form.

After that nonsense, she told me that she didn’t see anything she could treat me for right now. I had told her I was off the Benlysta, and she talked about Imuran, which I later learned isn’t a typical treatment for lupus. She doesn’t think I have vasculitis and she doesn’t think a spect scan is necessary, and the “maybe it’s your Addison’s/something else is going on” filled the air once again. She wants me to see another rheumatologist, someone who is an expert, and was already suggested to me by my current rheumatologist. I’m just too complicated. Which brings me back to my farmhouse doctor comment. Now I need to “see an expert”. See? Told ya so.

Between the deleting everything on her computer, and reading someone else’s file about abuse, and not being able to help me, it was a weird experience and I’m not going back. The frustrations with my current rheumatologist seem miniscule compared to the frustrations I felt getting a second opinion.

I’m sticking with what the neurologist says, and I’m going to continue to fight for the spect scan. He is a doctor who has a good head on his shoulders and knows so much more about things outside his specialty than any doctor I’ve ever seen. I’ll be sticking with my current rheumatologist. As far as treatment goes, I don’t know what direction that will be going in, it all depends on the spect scan.

I’m still in a lupus flare. I feel like the Tin Man. When Rocky Balboa said “My hair hurts”, he wasn’t kidding. I’m trying to stay positive and stay busy, and most days I do alright. I was pretty pissed yesterday though, as you can imagine.

I need a foggy day beach trip and some pizza, then I’ll be good. In the mean time, it’s The Wonder Years and crocheting a hat.

*high five*

I’m sorry Mario, but the princess is in another castle. #lupus

I had my Benlysta on the 3rd. I was sick the last week of February, so I had to push my treatment off by a week.  I was flaring before the 3rd, not just more pain, but the red face/chest rash, fatigue, heat sensitivity, and the headaches were really, really bad. I remember watching the Olympics and there wasn’t a night during it that I didn’t have a headache. It was pretty terrible.

I wonder if I would feel sexier if I started calling my lupus rash my ‘leopard spots’ or something.

Meow.

After I had the Benlysta, I was still flaring. About a week and a half later I called my doctor to tell her about it, and she wrote me an rx for Prednisone, and some vicodin to try since my other pain relievers seem to cause sleep apnea. I’ve been taking a break from the tramadol, because it just seems to effect my breathing too much. I don’t seem to have a problem with vicodin yet, but I’m only taking a small amount. I don’t like taking it, but the pain has been too ridiculous. I can’t just do nothing.

I hate prednisone. They should just call it predni-crack.

My doctor talks too fast. She’s in such a damn hurry to get me off the phone that sometimes after she hangs up I realize I don’t quite understand everything she said. I have a hard time concentrating on phone conversations for some reason anyway, but her eagerness to talk fast and not let me get a question in without interrupting her makes things difficult and confusing sometimes.

I was supposed to get some cognitive testing because my focus and memory have given me a hard time, for a long time. That particular doctor doesn’t take my insurance, so I will be seeking some testing from somewhere else at some point. I heard the testing is about 4 hours long. Not stoked about it, but I’d like to see if I can get some help, too. It has basically impaired my ability to have phone conversations beyond the “Hi how are you” and I have a really hard time learning new things, and enjoying books. I miss not being in a brain fog. I miss books. I miss learning things with ease and feeling proud about it. I miss when all these things didn’t feel like a miserable chore. I even miss school.

I thought over the phone she said I should take prednisone for 3 days. But when I picked it up, it was written for 30. So in retrospect, I wasn’t sure if she said 3 or 30. I called her Monday for clarification, and she didn’t get back to me til Tuesday. Her words were “4 or 5 or 6 days.”

Huh?

I guess I was confused because she didn’t know how long I should be on it, either.

As you might already know, I have an Adrenal insufficiency (Addison’s disease) and I can’t really fuck around with steroids too much. My adrenals don’t produce enough cortisol on their own, and taking prednisone regularly would cause them to ‘shut off’ and produce even less when I stopped the prednisone. It’s like they get used to the steroid being there so they stop producing. The last thing I need right now is an adrenal crisis. Most ERs don’t even know how to treat one.

My Endocrinologist said a short treatment with prednisone would be safe, that’s why I was so worried about getting ahold of my rheumatologist to clarify.

I’m in the market for another rheumatologist. One that gives me the time of day and isn’t so wishy washy in making decisions.

So I took the full dose of pred (10mg) for 4 days, and I’ve decided to taper down myself rather than just stopping it ‘cold turkey.’ I feel moody and jittery, and my heart has been pounding on and off all day. I still feel like shit from the Lupus flare, and now I have the added side-effects of prednisone. I really don’t feel like it helped the symptoms. My face is still red. I had a day where I didn’t go to bed with a headache, but it was only one. I’m tired, sore, and annoyed.

My rheumatologist wants to stop the Benlysta. That means I’ll probably switch to Rituxan at some point, or perhaps regress to Methotrexate injections. There has been talk for at least 6+ months about “whether or not the Benlysta is helping” and it’s pretty obvious that it isn’t. It was talked up to me like some magical miracle drug and I really don’t feel I’ve “gotten my life back” as I was told I would. I’m waiting on getting a SPECT scan to check for vasculitis. The insurance company has been a dick about that. My neurologist has been pretty awesome in dealing with them. He took my case to a medical board, to deem it medically necessary. In the mean time though, more than a month has gone by, and I’m still sitting here with really bad headaches, every day.

I tried some herbal things for my headaches. You’ll know I’m desperate when I start turning to plants for help, because I’m terribly skeptical when it comes to herbal things. I see it nothing more than a placebo effect for ailments that are easily remedied by something over-the-counter. It doesn’t help anyone in any real kind of pain, not in the chronic illness sense. It can still damage your liver, too. Just because it comes from a leaf doesn’t mean it’s safe.

That being said, I tried a Feverfew/B2 mixture called migrelief, and it actually helped. Like, immediately, and it helped a lot. The problem with it were the side effects. It gave me really bad insomnia, like ‘up all night and wired’ insomnia. It also made me have a foul taste in my mouth that was so bad I had to stop taking it.

My neurologist had recommended Butterbur, and I tried the feverfew mix while I was waiting for the Butterbur to come in the mail, because they are from the same plant family. You have to buy butterbur that is free of alkaloids so you don’t get liver damage(“PA free”). I started the butterbur as soon as I got it, and got no bad side effects, other than burping, but got absolutely no relief, either.

I have an appointment with another rheumatologist next week. My spect scan should be figured out by the end of March. My next appointment with my current rheumatologist is at the beginning of April. I won’t be getting any infusions that day, but probably be talking about what to do next.  I’m hopeful that things are moving in the right direction, but a lot of the time I feel like when I get to a conclusion, it ends up being “Toad” instead of “the Princess”, and I’m off to the next castle to battle lava, Bowser, and those fireball things that swing around. Hopefully I’ll find a 1up.

Damn goombas.