Chronically Jill - Lupus - Vasculitis- Addison's

2018 – Year of the Vestibular Migraine #ChronicLife

Vertigo has been a mainstay in my catalogue of symptoms for about 6 years now. Up until last November, I could only ever describe it to my neurologist as something that happens when I look down too long, and it was always coupled with neck pain. It would get worse in the summertime, and I would have to wear a soft neck brace to get relief, and also as a reminder to not look down. I really hated…

Can you get Raynaud’s everywhere? #lupus

I have Raynaud’s Phenomenon. Blood vessels respond to temperature change by spasming and changing color. My feet are especially sensitive, and are ice cold most of the time due to inadequate blood flow. My hands get pretty cold too, which doesn’t help the pain and stiffness. As time goes on, I am noticing more and more places on my body that are ice cold. The Raynaud’s that is in my feet has…

I’ve had some testing done and some medication changes so I figured I’d write about it. I’ve been really struggling with brain fog lately, so enjoy my word soup. Back in October or November, I started having an itchy patch on my right nipple. The skin became hard and I was quite worried about it. I already knew from a previous  ultrasound that I have dense breast tissue, which is painful and…

What Chronic pain does to people #lupus

Sometimes when my brain fog is bad I find myself staring into the internet. One of the websites I visit regularly is pinterest. My feed happens to be full of hairstyles, makeup, and clothes most of the time. I think the average person doesn’t realize all the things that pain can take away from you, I think they take for granted all the little things they do every day that they don’t even think…

BLOG ALL THE THINGS #lupus

I was probably supposed to write about stuff in separate blogs over the past few months but sometimes my brain just isn’t up for it. I had a manometry and pH study to evaluate for acid reflux in September. First I had a big tube probe thing put down my nose which was really fun, and I had to swallow water in intervals over the course of half an hour. Then I wore a smaller tube probe thing down my…

Are you a little bit better? #lupus

My rheumatologist asked me an interesting question a few months ago. “Since last year, would you say you are 40% better (since starting Humira)?” It was a hard question to answer. I feel like yes, some things are 40% better. But I am now dealing with new things, and some other things are worse. So to me, it depends on what symptom you’re talking about. I feel like I’ve traded awful symptoms for…

Acid reflux update #lupus #spoonie

For the past couple weeks, I’ve been losing a lot of sleep. I’m pulling all-nighters sometimes because I can’t breathe when I lie down. When I do sleep it’s for about 4 hours at a time. I’ve had this problem for a while and it’s gotten to the point where it’s greatly disrupting my life. It’s hard to make plans or appointments when you don’t know if you’ll be able to sleep or not the night before.…

A little of April and May #lupus

I know I am overdue for a blog. I don’t really remember where I left off last time. I’ve been to a new cardiologist and I had an ultrasound to see if there was any inflammation around my heart causing me chest pain and shortness of breath. I have yet to know the results of that test because the doctor cancelled my appointment since she will not be in town. The cardiologist did mention that I…

Process of elimination #lupus

I’ve had problems with breathing at night for quite a while. It started a few years ago and would happen occasionally, and seemed to get worse when I took tramadol for some reason. It’s gotten worse since then. I’ve seen  a pulmonologist, cardiologist, neurologist and a GI. So far everyone just blows it off. It’s been really bad. Two nights ago, I was up all night long. I went to bed at 7am. I…

February #lupus #ra #humira #spoonie

February was a long month. It seemed like my family and I were sick for weeks. My brother came down with the flu on Superbowl Sunday. Everyone’s been sick since then. We had a sudden heat wave and I think it just made everybody sicker. I had a sore throat for weeks, and then finally last week I got a cold. Once I actually got sick, it wasn’t that bad. But it took so long just to come down with…

Vertigo and stuff #lupus

I’ve been getting vertigo and shortness of breath from sitting on my couch. I agree, it sounds ridiculous. It must be a positional/blood flow thing. Like when you get a random boner, only vertigo. Luckily I’ve never had a random boner. I’ve been sitting in a chair at the table for most of the day to avoid it. But I reach a point where I can’t sit there, either. My neck and my back couldn’t take…

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…

  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…

Humira and stuff #lupus

I took a break from writing, and wordpress has a whole new interface. I really wish websites would stop changing things around. It’s really annoying to have to re-learn how to use something all the time. I’ve been on the Humira for a little over a month. I was a week late for my last injection because of insurance/pharmacy and because I didn’t ask my doctor for another sample when I should have.…

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…

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…

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…