eyes and lungs #lupus #stillsdisease

I had 2 doctor appointments yesterday. It was a long day. I’m pretty tired today. I first went to the opthamologist for a follow up about the allergy eye drops and the contact lens samples she gave me. The toric lenses are pretty uncomfortable. I haven’t had a pair of torics that weren’t uncomfortable. To me, they’re like sticking window clings to your eyeballs. The edges are too hard and can feel the lenses all day. I tell eye doctors this but they always seem to insist on trying torics anyway, probably because they are more expensive. I gave them a try anyway and told her they were uncomfortable, and now I’m just going to go back to my usual lenses. My astigmatism isn’t bad enough for them to be necessary anyway.

My appointment with her was very irritating. I probably won’t be going back.

I had some time to kill between appointments. It was hard to stay awake for some reason, which is odd for me. I get tired but I never really get sleepy. I was wondering if the Humira had something to do with it. Also, the eye doctor was poking around in my eyes and putting all sorts of drops in without asking me first, and it made me have anxiety. I could have also been sleepy from that, since my adrenals make me sensitive to stress.

After that I went to the pulmonologist. He seems like a nice doctor. I did a few breathing tests that measure for asthma and lung capacity, and he also listened to my breathing. Those tests didn’t show anything, but since I have shortness of breath and a lot of tightness in my lungs, he is going to do a few more specific tests. He talked about lung inflammation from lupus, and that it doesn’t always show up on certain tests. He seemed certain that we could find out what the problem is without running a million tests. I also already had a chest x-ray and they took some blood.

Tomorrow I will be doing the breathing tests for the pulmonologist, and I will also be doing a stress echo for my cardiologist, so it will be a long day again.

Actemra, 5 weeks #lupus #ra

I’ve had 5 Actemra infusions. This month my doctor wants to see me after 5 weeks (instead of the usual 4) to see what happens with my symptoms when the Actemra wears off. At my last appointment he asked me how I feel now compared to how I was feeling a year ago. I thought about it, I thought about all the things I write in my blog. I told him that I don’t feel any different than I did a year ago. I really have not felt any significant improvement since starting the Actemra. I’ve kept a blog, and a journal, and recently, a log of my fevers. I’ve thought about all the activities I do regularly, and whether or not any of them have gotten any easier. I just really don’t feel improvement in my pain or stiffness.

My eczema rash on my inner elbow has gotten better. But it got worse after my 4th infusion. He said I looked less red when I was there last time. My lupus face rash seems less intense for now. I haven’t broken out in the hot sunburn-like rash all over my body this month. This month I’ve still had the red knee rash, the red hot itchy painful feet, and the burning itchy rash on the backs of my knees. My hands haven’t had a rash but the pain is still the same. My raynaud’s is better, and the doctor pointed it out, but it gets better every summer. My feet and hands don’t get cold and numb when it’s 80-90 degrees out.

My fevers are still kicking my ass 3 times a day. They don’t always register high on the thermometer. Sometimes the number is “normal” and I feel hot and sick, and sometimes the number can be high but I don’t necessarily feel hot. I’m on 800mg ibuprofen (Duexis) 3 times a day, and I know that affects my temperature. I would feel a lot worse without it I can’t eat a cooked meal without spiking a fever, or move around too much without getting hot and sick. And I definitely can’t be outside. Sometimes I have to reschedule doctor appointments because it’s just too hot to drive 3 hours. Sometimes sitting still I’m just so hot I want to cry.

I’ve been reading blogs from last year and the beginning of this year. I’m still dealing with the same symptoms I was writing about in those blogs.

The doctor will probably decide whether or not to continue Actemra when I see him again. I’m still waiting to see how I feel on that 5th week, but I’m not expecting to feel different since I’ve never really felt any relief to begin with.

My muscle pain and fatigue is pretty bad. I feel weak. I was in the pool in August, doing mild exercise. Just moving around, really. I’m still sore and tired from it. It’s made me feel weaker than usual. It’s been hard to explain to doctors that this is why I can’t exercise. I never seem to recover. I never seem to get stronger.

It’s been pretty hot here. I’m clinging to sanity by wearing a frozen towel around my neck.

Joints and stuff. #lupus

I’m having some new joint problems. My knees and my knuckles get swollen, red, hot, and itchy. It feels like a sun burn. It is always accompanied by pain, stiffness, and loss of range of motion/ability to bear weight in those joints. I actually had an episode like this the other day in my jaw. I’ve never had anything like that before. The pain in my hands has been pretty bad. It’s almost as if I lose control, too. Last week I had a few days where I couldn’t type. I’ve been having a hard time using utensils. I’ve had pain in my hands for quite some time, but this is new. There doesn’t seem to be a particular trigger for these episodes, although they seem worse in quick temperature changes or if I’ve been standing too long.



Last time I saw my rheumatologist, he gave me a shot of kenalog to see if it would help with the joint pain. It did, to a point. It seemed like I went about a week without breaking out in the red rash around my joints. The pain was a little bit better. I can’t honestly say it was real solid “relief” though. He said that if it helped the pain that I probably have arthritis. I will probably be put on methotrexate again or perhaps a biologic. The fact that I’ve developed a hot rash that goes with it says to me that it’s rheumatic. I’m not a doctor but I’ve been known to connect a dot or two.

I posted my knee picture on a support group site and some members there thought I should go straight to the ER. The episodes go away on their own within 30-60 minutes so I haven’t seen a reason to run to the ER. I will, however, make my doctor aware of it. If they did not go away or lasted longer, I would consider the ER, but I won’t go unless I really feel like I need to.

In other news, my urinalysis showed that I’m definitely on too much hydrocortisone. I started tapering last week. I have to do it really slowly, and I’d like to go down at least 10mg, and more if I am able to. It will probably take me about 8 weeks to taper 10mg. If I try to taper in less time, I’ll feel like crap.

I’ve been taking a break from Duexis for the past 2 days (800mg ibuprofen) because my stomach needs a break. My joint pain is worse and so are my headaches, so I’m trying Aleve in the mean time. I know that could bother my stomach too. I don’t really know what to take for pain anymore. Everything either bothers my stomach or makes me have shortness of breath in the middle of the night that keeps me awake. My fevers come and go whether I take the Duexis or not. I feel like I have heartburn all the time. The weird thing is, the Duexis helps with esophagus inflammation that I get sometimes, but it makes me have stomach inflammation. I wish there was something that helped that didn’t cause so many problems.

2-month mark #rituxan #lupus

I had my final Rituxan infusion on June 12th. It’s been 2 months, and so far I don’t feel any different. I actually feel worse. I was told I would feel worse before I started feeling any improvement. The magic number is 3 months, so I still have a month to go before I will know if this first round of Rituxan worked or not. My headaches are still pretty bad. The imitrex seems like it’s not effective anymore. I don’t take it that much, because you’re not supposed to. But even though I save it only for the really bad days, it’s not helping anymore. I have been completely incapacitated by migraines for the better part of the year.

I’ve been running on 5-6 hours of sleep a day for at least a month. I’m pretty exhausted. I can’t take naps because I never fall asleep, and I just get a headache anyway. Pain and heart palpitations have me up by 5-6am and I rarely get back to sleep after that.

I’ve been treating pain with ibuprofen and nothing else. I can’t take anything else. I was on tramadol for a while but I started having a breathing issue (sleep apnea) and the tramadol made it worse. I was on tramadol for about 5 years before I started having a problem, so it’s still a mystery as to why it makes me have sleep apnea. There are other medicines that make me have sleep apnea, too. I was tested for sleep apnea, and they of course didn’t find anything because I didn’t take the tramadol. I feel like doctors look at me like I’m nuts when I tell them about this issue. I was given vicodin, and I found out I’m allergic, and it didn’t help anyway. I’ve never found a muscle relaxer that didn’t make me feel fucked up in some way, from vomiting to worse pain to mood swings. The fioricet I take for my headaches can help a little, but it has caffeine in it, so I can’t always take it. So far they haven’t given me anything that has provided any substantial pain relief. My rheumatologist keeps pushing antidepressants on me, and I really don’t want to take those. I tried Cymbalta a few years ago, and it didn’t help at all. It takes 6 weeks for an antidepressant to have any effect, and if it doesn’t work, you go through a weening and withdrawal period. I just can’t do it. I already feel horrible enough, and I really don’t think fucking with my brain chemistry is going to help inflammatory pain. I am at a loss as to what to do for pain relief at this point. I haven’t even talked about what pills in general have done to my stomach. Lets just say if I could say to hell with pills and inject everything instead, I’d be all for it.

I recently went to the cardiologist. I have been having really bad heart palpitations, chest tightness, and shortness of breath. It will happen when I’m just sitting. It happens when I eat. I don’t eat hardly any salt anymore because of it, but it will still happen. It’s like the digestive process itself causes palpitations for some reason. They wake me up in the morning and happen when I go to bed at night. There doesn’t seem to be one specific trigger, more like a little of everything. They are bad enough that I can’t do anything physical. My blood pressure has been high, in the 140/80 range most of the time, and my heart rate can jump anywhere between 70-115 for no real reason. It’s pretty uncomfortable. I wore a holter monitor for 24 hours, and dealt with the leftover adhesive and bruised ribs for another 48. The doctor’s analysis was basically “Yup, you have palpitations” but that there was no irregular heart beat. I had an ultrasound on my heart and carotid artery. There was no indication of inflammation or lupus activity there. He did mention that sometimes the inflammation can be so small that it does not show up in an ultrasound but can cause symptoms. He talked about putting me on an aspirin regimen but since my stomach is a mess that he didn’t want to give me another pill to upset it. He seems to think that heartburn could be the cause of my palpitations, and while I don’t think it helps, I really don’t think that’s the main issue.

The cardiologist also gave me norvasc, a calcium channel blocker for my high blood pressure. He said it might help with my headaches, too. I used to be on nifedipine for my raynaud’s, which is also a calcium channel blocker. It gave me a nice blood pressure but it gave me terrible headaches and heart palpitations. The norvasc works a little differently, so the doctor was hopeful that I wouldn’t have a problem with it. So far it hasn’t helped my blood pressure that much, and today I felt like crap after I took it. If only they could find the real problem instead of just handing me some pills.

I consulted Dr. Google and came to the conclusion that I need to be tested for overactive thyroid. I’m too hot all the time, I’m skinny no matter what I eat (trust me, it’s a curse) my hair is somewhat thin, I get pain in my throat that is unlike a sore throat but feels more like an ache in my ‘glands’, and, the heart palpitations and elevated blood pressure. Ever since I started treating my stomach issue, I’m hungry all the time. All of this points to thyroid.

Sometimes you have to google things. Sometimes doctors don’t come up with the answers, and you have to narrow it down to a certain specialty in order to obtain a diagnosis. I’ve successfully diagnosed myself before, and it wouldn’t surprise me if I was right this time, too.

My rheumatologist was in a panic about the heart palpitations, as if I hadn’t been complaining about them for a few years. She rambled on about cytoxan for heart involvement and made me lose my confidence that Rituxan was the right choice. It’s weird to feel like you have the wrong medicine running through your veins. I don’t necessarily feel that way anymore, but I am switching doctors. I need someone with more balls, to be honest. She’s never been very sure of herself, and makes it a habit of dangling the proverbial “you’re going to get better with this new medicine” carrot in my face. I just can’t take it anymore. I need someone to tell it to me straight and someone who can make decisions without that “….well, I don’t know….” undertone.

I’m having a terrible time with my memory. I’m having a terrible time typing and remembering to spell things. I’ve never had a problem with spelling before. I was the kid that got 100% on spelling tests. Sometimes my cognitive abilities are so compromised that I can’t watch a movie. I can’t read things, either. It’s frustrating and sad.

In conclusion, my pain is bad, my headaches are bad, I’m not sleeping, my heart is pounding, I can’t remember shit and I need a new doctor. Where the fuck is the Wizard of Oz?

And no, I don’t have POTS.