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.

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humira #lupus #stilldisease

I had a good doctor appointment on Thursday. I’ve been on Enbrel for the past four weeks, and seeing some subtle changes. My doctor walked in the room and immediately noticed that my skin is no longer covered in a mottled red rash. He seemed really surprised about it. I think “giddy” would be a better word for it.  I hadn’t noticed its disappearance myself. I guess I hadn’t been paying much attention to it, but now that he pointed it out, I can say that he is definitely right. I don’t know how long I’ve had autoimmune activity, but I can tell you that I’ve had that mottled rash since I was a kid. I never thought much of it. I do remember noticing it would get worse when I was cold or anxious. I remember my first day of second grade, being the new kid, and my legs were covered in it.

I’ve honestly never had a doctor be that excited for me before. In the past year I’ve become extremely skeptical of finding a treatment that would bring me some relief, but I’m starting to think differently.

I have a lot of gastrointestinal symptoms, including gastritis and esophagitis, which at times can be pretty painful. This week my doctor switched me from Enbrel to Humira. Both are TNF blockers, but Humira is a biologic that can sometimes help with GI inflammation. Also Humira is a nice switch because I only have to do the shots twice a month as opposed to the once-a-week Enbrel shots.

I did my first Humira shot 2 days ago and I am noticing a change in my GI tract. I didn’t realize it would work that quickly. I don’t think it’s a coincidence, because I’ve been feeling horrible for months and all of a sudden I just don’t feel so completely awful anymore. I’m still having some pain and heartburn, but something seems different.

I ate a snack today and didn’t regret it immediately after. That’s a big deal.

Maybe at some point I can eat real food again. My diet has gotten so bland it’s actually grossing me out. I miss pizza. And chili fries. And flavor.

My doctor has mentioned the possibility of vasculitis being present in other parts of my body. It’s hard to really know for sure. For the past 3 years or so I’ve had to cut out almost all salt from my diet, because I would have a bad reaction to it right after eating. My blood pressure suddenly became high. Both are strange occurrences for me because I have a disease (Addison’s disease) that usually requires a higher salt diet and usually tends to present itself with low blood pressure. It might be too soon to tell but it seems like lately I’ve been able to eat salty food without feeling that terrible after. It would be nice to be able to eat a small amount of salt again, considering how hard it is to leave out salt. Plus salt is flavor, and I like flavor.

All of that is of course a theory, but it makes sense to me.

I’m still having some fevers, but overall I don’t feel as hot as I normally do. It’s hard to gauge sometimes because the weather is still so hot here. But I’m having a few hours a day where I’m not uncomfortable. It’s been pretty nice.

I am having some trouble with my lungs. I suppose I have been for a while. My cardiologist’s assistant said she heard some tightness in my lungs. It definitely feels tight. I get short of breath easily. It has been affecting my sleep for a while. I’m going to see a pulmonologist. I had asthma as a kid and I do think that to some degree I still do. But I also think there is some other kind of inflammation going on as well. It’s gotten gradually worse like all my other problems. I’m doing a repeat stress test on my heart just to make sure, too.

My next Humira shot is on the 29th. I’ve got a few more doctor appointments coming up too.

Eyeballs. Enbrel. #lupus #stillsdisease

I’ve stopped the Actemra infusions and switched to once-a-week Enbrel injections. So far I’ve done 2 injections with the auto-injector. When the pharmacy fills my prescription I think they will be giving the prefilled syringes instead. The auto-injector hurts. It’s easy to use, it just jabs really hard.

A few days after my first injection I noticed my back muscles felt a bit better. It wasn’t miraculous relief but I was suddenly able to sit more comfortably after months of pain and weakness. I still feel hot during the day but I’m noticing I get the chills now, which I wasn’t before. I feel a little less uncomfortable in the fever department some days. Also, I had a few days where I didn’t have bladder pain. It was short lived, but it happened.

I’m going to continue with the Enbrel for 12 weeks and see what happens. My doctor is excited because Enbrel is much cheaper than the other medications that we were looking at, like the Kineret.

I went to the opthamologist last week. I haven’t been able to wear my contacts for the past few months, and they haven’t been very comfortable for years. I already use restasis but have been feeling like my eyes are still dry and gritty. I’ve been worried about having autoimmune inflammation in my eyes. I figured they would tell me I just can’t wear contacts anymore.

It turns out, for a change, that my problem is a lot simpler than that. I have allergies. I started using pazeo drops and for 2 days I’ve been able to wear toric lenses. I couldn’t wear torics at all before. Now I can see sharper when I wear contacts. Before, I was just using regular contacts. They were good enough, but not sharp. I haven’t tried wearing makeup with contacts again yet. I’m still giving the drops some time to work. When I put my contacts in yesterday, they still felt gritty for the first hour, but felt better after that. I’m hoping to get continued relief so I can wear my contacts more often. It’s nice to not have a pair of glasses on your face all the time, especially on headache days.