Updates and Craziness

Hi, hi. I only let 12 days lapse since my last post woohoo! Not a whole ton has happened between now and then. A few [more] med changes (big shocker right).

I tried taking the Metolazone for my edema and the only thing it did as give me heart palpitations. My PCP didn’t like that, so she prescribed me another med that I can’t remember the name of. My pharmacy sent me a message saying they had to special order it so who knows when it’ll be in. Hoping this one works and doesn’t have any alarming side effects. I tried again to convince her to let me take the kidney tanking combo by promising to take potassium supplements, but, she said no…again. I gave up; I discarded the Lasik and Metolazone. I also told her that my current Gabapentin dosage (900mg) wasn’t working (like it didn’t work the first time) so she’s having me slowly increase the dosage to see what works. Since my Methotrexate and Plaquenil just got upped and I’ve been on different diuretic meds. Makes sense. Tomorrow I start taking 1200mg, let’s see what it does!

Oh right! Now I remember. I had my psych eval. last week for my spinal cord stimulator trial. I’ve never had one done so I wasn’t entirely sure what to expect. The first part was filling out paperwork about my pain symptoms (check boxes off and yada yada) and what treatments I’ve tried. Easy enough. Then I had to fill out two long forms pertaining to drug and alcohol intake; I thought it was odd. Since I can’t drink and I’m smart enough not to take drugs, it took me 30 seconds. Then came some cognitive testing…? I was equal parts confused and dreading what I was going to have to do. I have to tell you, I’ve never felt more stupid than I did during this portion. I had to memorize words and repeat them back after a few minutes, I did well with that part. She did a few other verbal exercises, and then came the ones on paper. Most of it was easy but then math showed up. By math, I mean, elementary level math, and I had to regroup myself twice. Omg, I wanted to die. Thankfully, she knew that I had cognitive issues related to the MCTD and my current meds, so she laughed it off with me. Surprise, I passed! After it was done we sat and talked for a few, so I told her about my curiosity about having to have an eval in the first place. I told her the story about what I had been told was the reason for it and looked at me like I had two heads. She told me that the eval was centered around having the ability to self-regulate and be responsible since [once the device is implanted] we’re able to adjust the electrodes and what not. That’s why there was a big focus on drug and alcohol intake. That made more sense than what the other lady told me. The doc was even nice enough to offer to speak to a colleague to see if they take my mental healthcare insurance since I’ve yet to find a new psychologist. I have my appointment with my back doctor this Wednesday to discuss beginning the trial and, I assume make an appointment to have the temporary unit placed.

I think I’ve mentioned before that I belong to an online MCTD “support” group, not sure. Anyway, I usually don’t pay too much attention to it, but I decided to scroll through and see what topics were being discussed. I posted asking if anyone else was classified as “severe” like I am, [if so] what kind of meds are they take, and if they know of any other treatments that have helped. It’s nice to know that I’m not the only one sitting on top tier of the disease. I learned a lot from the responses I received, as well as the posts I read. The lot of us are on Plaquenil but that’s about all we have in common regarding medication. There were quite a few people who went off their medications and opted for homeopathic treatments. To each their own, but I know how shitty I feel off my meds, so I’m going to continue my unpleasant cocktail of meds. I also learned that there’s a diet tailored to those of us with autoimmune disorders. I decided to Google it and I laughed. The list of things you can’t eat is outrageous! (I’ll post the link on the ‘Links’ tab in case anyone wants to read up on it). Just a few things you have to eliminate are: coffee, chocolate, certain vegetables like tomatoes, and grains. I noped right out of that. Even though I don’t drink nearly as much coffee as I used to since I quit smoking, I still like my daily coffee and occasional Starbucks. Don’t even get me started on the other stuff. The purpose of the diet is to take away a shit ton of food (kind of ‘resetting your gut’) and then slowly reintroduce items to see what makes you feel better or worse.

A lot, and I mean A LOT of people are on this or other restrictive diets. Gluten free, vegan, Paleo, Keto, yada yada. Good lord. I felt like asking “what are you allowed to eat? Sticks?”. Some were instructed by their Rheumatologists to begin the AI diet…um…my doctor dismisses my symptoms, and everyone else’s makes them go on diets? I’d rather he ignores me [since I go to my PCP for referral guidance anyway] than to tell me to eat nothing but tofu and tree bark. No thank you. Since I don’t have any GI or abdominal issues, I don’t see the point in punishing myself; life does that enough. I learned a lot the other night as I hardcore creeped on the group page.

I’ll post an update after I see my back doctor on Weds.




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