Getting to this point was not an easy journey. When I started, I was hoping to replace opiates because the DEA was causing shortages of the only opiate I was not allergic too. My RA damage is severe, and the activity was still in the severe category at the time. In the back of my head, I truly thought this cannabis experiment would fail. Decades of raging autoimmune disease is rarely forgiving! Persistence and being a stubborn horses arse paid off, because a year ago I woke up knowing I didn’t have to take another opiate, and was not going to have any more withdrawal symptoms! What a glorious moment! If this journey ended there it still would have been a success, however – it ended up being SO MUCH MORE.
Right now, I am off 7 daily prescriptions and 2 that were as needed. So cannabis replaced 9 prescriptions total! As a result, I lost almost 70 pounds! Let me emphasize – I lost over 70 pounds of prescription side effect weight. That led to being able to lower my infusion, which was a good thing considering how it is effecting my cholesterol and neutrophils! I did consequently add in Lipitor for the cholesterol that Actemra is steadily rising, but hoping that lowering the dose will also improve the results! (I was 95% vegetarian in between results, and my cholesterol has always been in the 120-150 range prior. Side effects of biologics!) All this sounds great, but how am I functioning?
Last January-May, I was in such complete flare and misery that I withdrew from most of the world. This site was the only social media that I had the energy for, and people were actually worried about me. My disease was still in the severe activity level range, and functioning was SOOOOOOOO HARRRRRRD. I spent most of my days binge watching History Channel or YouTubing from my bed. Hiking was an automatic NO and I was about 80 pounds overweight from medication. January through May in Colorado is absolutely insane weather wise. We get snow storms, hail storms, and things are rapidly changing with the air pressure. There are also these storms that come in from the south that the mountains can’t buffer, so they hit hard. This past week we had rain, massive hail/electrical storms, tornadoes, snow storms, and flooding (actually I think this was ONE DAY LOL). So turbulent stuff for these months! This is my “autoimmune season”. This year I have actually been outside, maintaining my friendships better (energy for social media), keeping up with my Granddaughter who moved out in November, and have actually been able to function better. This season, I have had several autoimmune days and suffered from germ warfare – but I am OKAY. Am I running and jumping and climbing mountains? Absolutely NOT. My hands are hurting just from typing this, my knee is still deciding whether it wants to hold my weight today, and my feet are just being assholes. Because I have increased my activity level, I am starting to see some extra hand pains and my feet are mad as hell – BUT I AM USING MY HANDS AND FEET! That is an amazing thing!
I have a garden attempt going, have been out hobbling with friends, typing a LOT more than I would ever type before, and am enjoying this new recession in disease activity! Winter/Spring transition is tough, but nothing like Hurricane Season, Tornado Season, The Yellowing, and Satan’s Armpit Season. So over all, this has been a success.
While I am still living with RA, lupus, Sjogrens, and Reynaud’s, I am living. My disease activity has significantly decreased, and my labs have been almost normal for the last 4 runs (watching cholesterol and neutrophils which were high and low respectively.) I actually feel good enough to deal with some of these other symptoms/issues that were lingering in the background like neuropathy (improving s-l-o-w-l-y) and some deformation issues. No, I am not cured. I still have to plan everything I do, and half of what I plan never gets done because of pain or fatigue. After each PT session, I usually have to rest several days to heal my joints good enough for the next session. Cooking dinner and showering kick my butt as far as activity level goes, so I am still way behind what anyone would consider average activity. But I am getting there.
Everything we do is temporary. At some point, I know I will lose every ability I have. Even this increased but underwhelming activity level is a blessing and an opportunity for me to collect an experience, pain or not. I truly love life and can say hands down that cannabis is extending my activity level and allowing me to live. My quality of life isn’t “normal” (that word needs to be stricken from every autoimmuner’s vocabulary) but it is good. Happy Cannaversary to me!