Just checking in here, been off for a long time-- basically, I mostly use a different computer, which remembers the password for this site, but I cannot remember it myself, and thus cannot use my primary computer.
Muscle and joint pain, and fatigue, was worse over the summer, and I did have to scale back swimming and body boarding in September. I didn't do anything about it because I was too busy anyway-- after not playing live since 2014, I played 7 shows this summer-- a few little showcases that were 2 to 5 songs, a few full sets ro 30-50 people, and one big show in Connecticut that sold out at 300! (Went well, we got a lot of good feedback!) Rehearsing for those was really hard, particularly for the last one, which was very fast punk rock, and very demanding, even for a 20-minute set. Had a lot of problems with my thumbs and bicep, kept screwing around with strap length, had my guitar set up again to lower the action as much as possible.
The night before the show, I used a lot of THC and CBD-- I went to 10mg of THC, which is the highest I will ever go. Unfortunately, this resulted in a two-hour episode of terrible stage fright and near panic attack at the end of rehearsal the night before the show. However, it did the job... my thumbs barely hurt at all the night of the show, when I did not dose until I got offstage, and I was in exactly the right frame of mind for the performance. The other guys were tremendously supportive when I freaked out the night before, but then they got terrified the day of the show, when I was rock solid physically and mentally, so I was able to help them stay focused.
When I got home, I really wanted to get in some more swimming and bodyboarding before the winter. I increased CBD to 25 mg + 1 mg THC most mornings and evenings-- nearly eliminating the THC 5 days per week -- and only went up to 7.5 or 10 mg THC one or two evenings a week to see if it helped with headache. This seems to work well, though personally, I still feel like 10 mg THC is absolutely the upper limit and really shouldn't be used more than 1 or 2 days per week. The THC seems to be necessary occasionally, but really, I can do 5 or 6 days in a row using only trace doses, and that's probably better all around-- clearer head, less anxiety. This is not medical advice, it's just my own experience.
This worked, and I was able to resume swimming and body boarding. Muscle and body pain is nearly gone, though stamina is still a little less than this time last year. Dysphasia and headache are mostly unchanged, acid reflux might be a bit worse.
The antiopioid hysteria continues unchecked at my health care provider. Provider keeps ordering more evals and tests, and I am very concerned that these are pretextual, the results will simply be weaponized to justify withdrawing hydrocodone, which I take 5 or 6 times a week during the busy season, 4 or 5 times a week when I'm working less. The dose is under 10 MME, and I've been stable on these meds for over 10 years; if they try to force me much lower, I'm probably going to have to push back. That could get quite ugly, and I'm really not looking forward to it. I do think hydrocodone, in particular, is part of the reason my symptoms are as well controlled as they are. I had a great relationship with my provider for decades until this stupidity started. Oh, well. Let the chips fall where they may.
I also have some new episodes of chills with low fever though I'm not sure that's MCTD, because it started after having the Shingrix vaccine. It was just awful for two days, then improved for two days, then low fever returned briefly for one day, then resolved. Then it came back two weeks ago for one day, though the fever was even lower-- barely elevated. I also noticed that my heart rate gallops a bit and seems fast for periods of an hour or two each day nearly every day since that vaccination. This is slowly decreasing, and I won't get it looked at for at least three months. As usual, my concern is that the danger of being prescribed something I don't need vastly outweighs the danger of the symptoms-- last time this happened, it was from blood pressure meds, and resolved on its own 6 months after discontinuing. This would NOT be true for many of us with more severe symptoms, it's just my own experience.
Anyway, so far so good. I am very grateful I can keep working, and hope that continues. It is frustrating to be forced into a more adversarial position with my healthcare provider, but I have to remember: They don't like this, either. One of my doctors actually said, "It's getting impossible to practice medicine," which is definitely true-- the regulatory burden has become astonishing. At the college where I work, I hear that a lot of students are opting out of pre-med, sometimes on the advice of family members who are doctors.
Part of my plan for the new year is to REFUSE to be goaded into fighting with my doctors, my neighbors, or friends over politics (which is driving a lot of the worst health care decisions, IMHO) and to have compassion for those I disagree with. If I must use resistance or direct action to advocate for myself or my own patients, I will do so from a non-adversarial position, and try to treat others as I wish to be treated myself. We really are all in this together, and I will not become a pawn in proxy wars in ideological/political battles-- whether that concerns opioids, SSRIs, managed care, electronic medical records, etc.
Happy holidays, and best wishes for a safe, healthy, relaxing and enjoyable new year!
Hello everyone,Its been a while since I've logged on. I must say, this year has been one hell of a roller coaster, for myself and all of us. I hope the holidays aren't causing any flare ups.I am very scare at the moment. 3 of my doctors are concerned I have pulminary hypertention... I just turned 22, and I was diagnosed with MCTD right after my 21st birthday. Which means if I do have...
Hello again!I posted a while ago and wanted to update everyone on my throat, it is the most bothersome sysmptom for me. I went to an ear nose and throat specialist in July, she put a tube down my throat and said all good up to the vocal cords go see a gastroenterologist. I went to see her today, she will do the same but down to my stomach. She says it sounds more like Sjogrens than like...