Recap, along with an update.
It’s been 7 months since I have posted anything. And let me tell you that it has been a very wild ride with my health. Both my physical & mental health. If you haven’t read my blog before, you should know that I have several chronic illnesses. In 2013, when I discovered the glory of online health summits & functional medicine, I made the decision to eventually go off the many medications I had been talked into taking since first being diagnosed with some mental health issues in 1999. I was basically a Guinea pig for this county’s psychiatric community. I believe that the start of 2008 was when I really started to be over-medicated & by 2010 had had my first serious introduction to criminal law. It was not fun, & something I carry with me to this day, feeling guilty & ashamed of, even though that did help me obtain training & certification as a Peer Specialist in the Mental Health community.
After being given the Latuda insert last September (2017), and deciding to read over it to see if any of the symptoms that I had been complaining about to every doctor I have + friends & relatives, I came to the section on Neuroleptic Malignant Syndrome. Well, Holy Shit! I had all the symptoms listed (that have caused me to complain, sometimes constantly, especially being hot & the excessive sweating) except for (oddly) the very high fever. I brought this up to my psychiatrist & even showed him the insert. He lowered the dose by half. Even though the insert said to stop the Latuda immediately, go to the hospital & be flushed out. Keeping this statement in mind, I decided that this was it. Four years had passed since I made the decision to find alternatives to my psychiatric medicine & maybe some of the medicine for my physical issues (which in turn, cause severe anxiety, depression, & just generalized stress). So in my January 2018 psych visit, I asked to be weaned off of Strattera. Which he begrudgingly agreed to…with much huffing & puffing as he wrote out the script directions to wean off of the next refill of a lower dosage. A few weeks later, I had noticed a difference in my mental status. I could actually focus better! April 12th into the 13th brought what ended up being about a 7-10 day migraine that required a methylprednisolone pack a few days later to help the inflammation in my brain. I was getting so sick on “Friday the 13th,” that I was not the greatest companion for a close friend when we took my dog & my mom’s dogs to the local state park for a picnic. I ended up not being able to take my prescriptions & supplements, which, by Monday, the 16th, I decided that I just wasn’t going to take the Latuda & Pristique any longer. I know, I know, “Cold Turkey, & Bad! Bad! Bad!” But, I just had had it with side effects & the fact that I had been the “Here I highly suggest you take this (times dozens of prescriptions)” & “Let’s see what happens.” When you think about it, that’s really how reality is anyway. Nobody knows what’s going to happen, regardless of your degree, or lack thereof in any given subject.
Over the summer proved to be worsening for my horribly injured (many times over) & diagnosed RSD/CRPS #2/Causalgia right foot. I have become more & more unable to even be able to take Simon, our dog, around the block. In the September visit to the foot & ankle surgeon for a pre-surgical exam for surgery #3 for the “not really classic” Tarsal Tunnel; he was reviewing my MRI from April. He started to make some grumbling noises & said, “The radiologist never put any of these anomalies on your report. You have a lot of swelling all around the end of your tibia & fibula. And this extra bone here? That’s not supposed to be there. Ballerinas & people who stand on their toes all the time get it. It’s the Os Trigonum. You have Os Trigonum Syndrome. And possibly Posterior Impingement due to that extra bone & where it is in the anatomy of the ankle region.” So a few weeks later, I was in for an Ultra Sound guided Lidocaine injection into the joint at that area of the extra bone. My surgeon ( who is sent ballerinas from Philadelphia, PA & NYC) suggested looking up “Hamilton,” the author who wrote a lot on the physical therapy treatment of those. Apparently, his wife is in the NYC Ballet & has this issue. So now surgery #3 is on hold until I can’t take it anymore. I was having my wonderful chiropractor & massage therapist follow the treatment on the PDF from Hamilton for this, but that stopped this week on the 11th. As my chiropractor wants me to just “chill the hell out” & give myself some time so that my body can heal itself. She would like me to just sit still & stop always researching the cause & ways to fix my problems with the next guru, or herb, or cream, or vegetable/fruit smoothie, etc. She stated that my body is so much smarter than I, her, or anyone else is & knows what it’s doing.
One very high concern I have is that I have gained 16 pounds since January. SO, sometimes I really have to battle those old (like from elementary school up until around age 35) very horrible eating disorder thoughts & force myself to eat regularly. Part of the problem is constant nausea from the pain. It feels like wherever the most painful throbbing, thumping, buzzing, the aching point is at that moment, there is a nerve directly to my stomach that makes me feel like I just got kicked in the gut after gorging myself at a smorgasbord. So I kinda don’t really want to eat when I feel that way. My chiro & my wonderful PCP (in which we saw yesterday) want me to eat more regularly, as does my husband. My PCP also wants me to take it easy & start taking an unpopular medicine in the psychiatric community for my anxiety at bedtime; seeing that I am screaming myself awake & jumping up into panic attacks shaking, crying, etc. so frequently that it causes Simon to jump in my lap, or close to me scouting the area for intruders & growling or barking. I hate having this C-PTSD & the nightmares that come along with the multiple traumas over decades. My psychiatrist does not like that my PCP, PA, & rheumatologist have suggested this medicine (that has also worked in the past to calm my fibromyalgia twitches & jerks) many times over at a very small dose at bedtime. My brain keeps battling between the psych community’s fear of addiction & crazy-acting vs. the above 3 medical staff (who have been caring for me since 1994 & have seen me in many psychiatric-medicine-induced stages) wanting me to take care of my anxiety. I just want to be in ballet class, at the barre again, in the centre of the floor at the dance studio, & on stage performing again. But my foot & ankle, now up to my leg into my back, do not want me to do anything but sit on my ass with my leg elevated, wrapped, iced, creamed/balmed up with menthol & others, my TENS unit on there &/or the Oska Pulse (PEMF) machine near there, or sitting in a tub of Epsom salt mixed with pain relieving essential oils.
Upon the recommendation of my wonderful therapist/psychologist, who has really gotten me straightened out as far as amino acids & some other supplements go to help my brain chemicals kick back into gear, I am going to start biking. I got the blessing of the foot/ankle surgeon. I just need to pad & wrap my ankle & I am not allowed to use the straps, just regular pedals. My PA, 2 weeks ago, suggested investigating a stationary bike that will be comfortable for me to use, & my PCP agreed yesterday. So I started investigating stationary bikes. Plus once spring rolls around, we are hitting the pavement. We have also been investigating a better mattress for me/us. We currently have a Tempurpedic, I think the classic one. I bought that in 2011. BUT…I am getting to the point that you could cook your breakfast on my backside between my lower ribs down to the top of my thighs. I can’t tell you how many times I get up to go to the bathroom in the night & come back to a disgustingly cold sweat shadow. A note on the Latuda/possible-NMS symptoms that were FINALLY realized last October. What I had been complaining about for many years was the extreme, excessive sweating that just seemed to shoot out of my pores. And it wasn’t just like the forehead, armpit, foot sweat. Those areas were actually completely normal, if not undersweating. It was weird things, like the back of my skull, forearms, elbow crooks, behind the knees, & quads/hamstrings & calves. I can’t tell you how many pairs of shorts & pants my forearms soaked b/c of the sweat dripping off or when I rested my forearm on my thigh. Or how many times I would have to change my clothes during the day & take an extra shower before going out in public. I had to keep drinking water, or else I would get so dehydrated…just from sitting there! This was not even a high humidity or temperature issue. I could be standing in a foot of snow barefoot, in shorts & a tank top & the sweat would just be running down my face. So, by May (2 weeks after that last dose of Latuda & Pristique), I was pretty much sweat-free in a comfortable or chilly temperature.
Over the summer, I also weaned myself off of gabapentin & took the last one Sept. 23rd, I believe it was. My 3 primary lady docs/PA, my neurologist (seeing me since 1993), my psychologist, & chiropractor want me to stay off of those 4 & not go on anymore (unless absolutely necessary, like life-threatening). I’m also being referred to a local pain management doc that deals with alternative methods that are non-detrimental to the body & completely legal. (My current pain management docs & CRNPs are 55 miles away at the teaching hospital where my foot surgeon is.) My PCP was the 4th doc this year, since the end of March, to tell me I am a good candidate for legal alternative methods & should investigate it with her leading the way with an actual referral. I am thankful for my medical staff. I’m still not convinced I needed my ass handed to me on a platter, but you know what? I did probably need to hear it…maybe not in that tone…with at least 1 F-bomb in my general direction. But maybe, just maybe, I was going a little nuts with like 7 books open up on the bed & scribbling notes in my personal hieroglyphs while listening to webinars & courses I signed up for on holistic & naturopathic medicine. It’s very hard. I feel like I’m on a quest for the best health I can be in, & I don’t think I’m getting that with the environment of the county we live in. I can’t tell you how many times my psychologist tells me that we should move. And in the past year, I think both my husband-type-partner & I have done some dreaming & maybe even future planning of “how can we move to lower Maryland?” in our minds. Which is exactly where we were in August, during an almost 3-month bout of horrible vertigo with full nausea that started in July for me. Let me tell you, it wasn’t the greatest to be a passenger for 250-300 miles, even though we took the scenic route, instead of the Turnpike. But boy, did we have fun with Simon at the beach & camping. We’re actually hoping to go back down in my new-to-me car I am transitioning to soon. Once it is fixed & inspected, that is. I’m not sure what my husband is planning in his head for this trip to MD/VA. I would just L-O-V-E to do the Polar Pony Plunge again on New Year’s Day at 1:19 PM at the Assateague National Seashore in VA, through Chincoteague Island’s “Christmas By The Sea” celebration. We had so much fun in 2016/2017 over those 4 days at the end/beginning of the year. Maybe my hopes & dreams for the 2019 Polar Pony Plunge of donning my Wonder Woman will come true, even if my hair has only gotten to my shoulders. (I made the decision to grow it out from my Faerie/Pixie Cuts so that I do not have to wear a wig to become Wonder Woman. It will be for a yearly event that my husband and his best friend go to, but details are still under wraps.)
It’s good to be writing again & sharing some of my journeys through chronic illness with you.
As always…Thanks for reading. Take care. Be as well as possible. And until next time…