Tomorrow and energy and stuff #lupus

My rheumatologist told me last week that we are doing everything we can safely do to control inflammation and the pain caused by it. The next step is to try to control the pain not caused by inflammation, and also my brain fog issues. I’m seeing a new specialist for those things tomorrow. I’m not a fan of going to see a new doctor. It always makes me nervous.

I’m still struggling with energy. It doesn’t help that I can’t seem to get a decent night’s sleep. I woke up every hour last night, mostly because I pee too much. I feel like a sloth today. I’m having some shortness of breath that isn’t helping either. I’m having some headaches that come with vertigo and feeling lightheaded. They make my neck hurt too. I’ve had them before. They’re not too bad this time but they make it really hard to concentrate. They make the brain fog a lot worse. They get worse when I look down for too long. Sometimes they make my muscles feel weak, and they make my teeth hurt. They’re weird headaches and they feel awful. I’m pretty sure they are vestibular migraines. When I can rid myself of the headache/neck ache, all the other weird symptoms go away too.

I’m taking more vitamins. I went up on my iron and started taking D3 softgels instead of tablets. They seem more effective for some reason. I get more achy at night when I don’t have enough D3.

I’m backing off on the ibuprofen. Mostly just to see what happens.

My BP seemed a bit on the low side today. I’m gonna try going back to my usual dose of Florinef. Maybe it will help my energy. It might give me more headaches. I don’t know. It’s a medical Rubix Cube.

I had a minor stomach flu on Monday. It wasn’t really that bad but I still don’t feel 100% yet. Today I would normally do my Humira shot but I’m gonna wait an extra day to make sure I’m over it. I’m kinda too tired to deal with stabbing myself today anyway. It’s an easy process but the injector pen is painful.

I’ve been using restasis eye drops for a few years. My eyes used to feel so sticky and dry. I’m taking a break from them now. I feel like every time I use them they make my eye feel irritated all day, which seems counter-productive. I’m using Pazeo allergy eye drops now and they seem to be taking care of the irritation and my eyes don’t seem to feel dry even though I stopped the restasis. I’m still not wearing contact lenses that much but I am able to actually wear them when I want to. Mostly I’m just too lazy to put them in.


Humira update #lupus


I’ve had about 6 or 7 humira shots. I am noticing some changes, both good and bad. I’m due for my next one tomorrow.

To summarize, so far it has helped some of my lower GI pain and symptoms. The relief there was actually immediate. I lost some bloat and I am more regular now. At one point my stomach was hurting so often I didn’t really want to leave the house. I still get some  flares (like today) and have days where things aren’t moving along but it’s not every day anymore.

On the flipside, I am more tired. I’m having a hard time finding the energy to do daily things. I’m getting short of breath pretty easily. Any bit of exercise I am able to do makes me pretty tired and sore. My body temperature is up and down, but never comfortable. I’m pretty sensitive to heat, even when I have the chills. My fingers and toes are going numb and turning blue and white. My face turns red, and I’m waking up in the night feeling too hot and feeling like my feet are on fire. My overall pain level is the same. I’m a bit more headachey. The morning stiffness lasts all day and clothes feel painful sometimes. I’m getting bad cramps in my hands and feet, and sometimes in my back. My throat is sore, my nose has sores in it, my mouth hurts, and my lymph nodes in my neck and underarms are tender. My periods are off schedule, which is really strange for me. My focus is terrible, and my memory sucks. My gastritis is painful and my acid reflux is obnoxious. Not much has changed, some symptoms are actually worse, or have returned.

I’m not expecting the Humira to help everything. I was hoping for less joint and muscle pain and a little more energy. I think that’s a realistic expectation. I really wasn’t expecting to be more tired. Sometimes I’m “too tired to move” tired, and sleeping doesn’t make it better. I was hoping I’d adjust to the humira and the fatigue from it would wear off. I’m still not sure if it’s the treatment for me. It’s helped so much with my lower GI pain, and that would be hard relief to give up if I were to switch treatments. I just wonder if there is something that would help a little of everything.

I could only sleep on my left side last night. I woke up pretty achy this morning. I had a nice reprieve from my nighttime breathing problems, but now it’s back and this time it’s triggered by rolling over at night. It must be related to my vasculopathy, and rolling over changes my blood flow or something. I’m still doing the breathing exercises. They haven’t helped much for the past few nights. Sometimes I am too tired to do them. Sometimes they make my hernia hurt. They’re not very fun.

Vasculopathy wasn’t even a google-able word a year ago. Now they’re doing research on it and there’s information online about it, which is pretty great.

Magnesium has been giving me a headache so I’m taking a little break from that. I bumped my vitamin D3 back up to 1600 IU. I’m still taking slow release iron. I started taking 7.25mg DHEA. I have low testosterone and DHEA is supposed to help. So far I don’t really notice anything besides oily skin. My endocrinologst wanted me to start at 10mg but that dose was giving me a headache. I can probably work my way up to it.

I’m trying to do some walking when I feel up to it. Aside from the El Nino rain, the weather has been more forgiving lately. Sometimes the cold air makes me stiff, but it’s still easier to manage than the heat. I saw an RA article once that had some suggestions and one of them said “exercise when practical”. Putting it that way makes so much sense. Depending on the weather and how you feel, sometimes it’s just not practical to exercise because it could just end up hurting you. People with autoimmune and autoinflammatory diseases can’t just push themselves through stuff like healthy people.

I’m drawing more lately. My hands are stiff and it’s not always easy to make clean or straight lines but I’m managing to work around it. I can also draw digitally now since I have a Wacom tablet. It has taken the stress out of set up and clean up. It has also taken some of the discomfort out of sitting and drawing as well. I can just sit, draw, and delete. It’s a good warm up too and I’m hoping it will strengthen my hands. I lost my confidence in it for a while but I’m starting to feel better about it now. I was getting to caught up in the idea of the end result and not really enjoying the process. I also think I had some amount of anxiety over doing it because I know it causes pain. I can work around that a little better now.

My sleep schedule is still weird. I’m up til midnight or 1 and I sleep till 11am. I don’t think it’s unusual for a person with adrenal insufficiency to have a schedule like that. I know that when I get up early I feel awful all day. Luckily I have the freedom to sleep when I need to.