January-March stuff #lupus

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 doesn’t have a treatment. But I was alarmed by the new symptom along with an enlarged sore lymph node on my left underarm. I requested another ultrasound where they looked at my breasts, and also my underarms. The ultrasound didn’t show anything unusual but I wasn’t satisfied with that test alone. I pushed for a mammogram, which they denied at first because I am under 40, which begins my rant:

With all the breast cancer awareness events and t-shirts and pink ribbons everywhere all the time, why do I have to beg for a mammogram? Because 26-year-olds don’t get breast cancer? They gave me such a hard time about it, and then when I finally went to get it, they told me “Don’t come back until you’re 40.”

My symptoms really scared me, they lined up with Paget’s Disease. I just had to know for sure that everything was normal. And it was, aside from finding out that I have painful dense breast tissue growing all the way up into my armpit area. Now I know why I hurt so much there all the time. And the lymph node is nothing, just an enlarged angry lymph node, probably from the lupus.

Dense breast tissue does raise your risk for breast cancer and I will be pushing for another mammogram when I feel like I need to, regardless of what a snooty desk clerk tells me in between smacking her gum and biting her fake fingernails. I urge anyone else who feels something isn’t right to do the same.

So, that’s it. Just sore boobs. Oh goodie.

I recently went to get a second opinion on my lupus treatments and was told I was being treated “conservatively” and the doctor decided it was worth a shot to raise my humira dose from twice a month to once a week. I’ve been doing weekly injections for a little over a month. I think I feel more tired. My pain levels are the same, they might even be worse. My elbows have been pretty bad, and recently my upper back and neck. I have the chills during the day, and I get really hot at night. I think I had that before but it seems a little worse and a little more predictable now. My lower GI pain is about the same. I seem a bit rashy lately. I did notice that being in the sun doesn’t seem to make me sick right away like it usually does, but also it’s not quite summer yet. It’s only been a short time since I increased the dose, so we’ll see what happens when more time goes by.

I went to see a new GI doctor that was recommended to me by my other new doctor. He said that my other GI was a “procedurist” and that this new doctor was good with motility issues. She diagnosed me with “functional dyspepsia” and explained that there are too many nerve signals being fired off between my brain and my stomach. She is treating me with amitriptyline. It’s an antidepressant but in small doses doesn’t alter mood and can help stop some of the excessive nerve signals. I started off at 10mg about a month ago and increased it to 20mg a few days ago. So far I feel a lot less of the gnawing gastritis pain at night which has been nice because I was losing so much sleep. I don’t really think much else has changed but I have to give the 20mg a chance to work. I’m really hoping eventually I will be able to eat some regular foods again. I’m still on the bland diet and it really sucks.

I am still having trouble swallowing, and clearing my throat all the time. I am still accidentally inhaling food, and feeling full too quickly.

I’m giving mindfulness a try. In my interpretation of it, it’s just teaching yourself how to give your mind a break so that you are not overloaded with stress. Some people practice traditional meditation but that can be difficult and uncomfortable for people with chronic pain and focus issues. So far I am figuring out when I need these mind breaks, and doing something tactile and completely focusing on that one activity. I was told to try something like petting my cat or rubbing lotion into my hands. It’s really hard to do it and to focus on it without thinking about actually “being mindful”. My brain likes to go 100 miles per hour sometimes. I think between those two activities, hand lotion one seems to be easier to focus on, since it feels more sensory (but without sensory-overload). Some people concentrate on their breathing to be mindful, but breathing exercises usually stress me out. And my hands get dry anyway, so the hand lotion is a good choice for the time being. I hope I can get a grasp on it and take my stress levels down a bit. Most of my stress is from pain which is something you can’t separate yourself from, but if I can teach myself not to focus on it for even a short time I think it could help.

I think I experience mindfulness when I listen to music sometimes, because I become completely engrossed in it. But music isn’t always appropriate when you feel like you are having sensory overload, and lately I’ve had more problems with feeling “sensed-out” so it hasn’t been a good solution on some days. I started to feel like music was giving me anxiety and I’ve never experienced that before, and it sucks because it has always been a good distraction throughout my pain journey.

I wonder if daydreaming counts as mindfulness since I do it a lot and completely forget where I am, ha.

I still have costochondritis. I can’t really wear a bra much anymore. I have to shower before bed because my rib cage is so stiff. I’ve been putting voltaren on the area for about a year now. I don’t really feel like it does much, to be honest. I feel constricted in my chest all the time. And when I sit in certain positions it gets worse. The hiatal hernia probably doesn’t help either. I sat on the couch for a bit recently and ended up feeling like someone was tearing a hole in my diaphragm for a few days after. I have to sit on more firm surfaces, but at the same time I have to have a cushion under my bony ass or else it goes numb. It’s always a contradiction with this disease. I miss being able to sit on my couch. The problems I have with my body are stupid and frustrating.

My brain fog seems to get worse every year. I am looking into treatments for that and trying to decide if I want to put myself through expensive grueling 6 hour testing or not, so they can tell me, “Yup, you have brain fog.” We’ll see.

I had a sore throat for like a month for no reason, that was fun. Thanks, Still’s Disease.

I suppose that’s about it

ttfn