Hi All,
It's obviously been too long since there has been anything coming from me or anything from the group. I get persons checking out our support group wondering if we still exist. Some send email and they are attended to, but who knows the number who just stepped away. So, I'm writing this, to place in our blog, for that purpose if nothing else.
Our support group still exists. It's moderator has been absent.
This wasn't a kind winter for me, and I've still yet to recover from it. Though I have been getting better year over year, I still suffer from my primary illness, yet to be officially diagnosed. I believe it has to do with the mountaineering or hiking in waist deep snow climbing up mountains, which I was doing prior to my body's failure. This failure had one key new symptom, a severe intolerance to cold. Skipping to this last winter, my cold intolerance was so much better than it had been years before, so leaving my right hand glove off as I drove out of Walgreens, after picking up my meds, didn't seem unreasonable. About five minutes from home I noticed my hand's behavior being similar to past events which turned out badly. My hand's symptoms of feeling freezing cold, and numb, soon brought on dysgeusia, a new word I learned in my recent, otherwise complete waste of my time (probably) appointment with an UNM Neurologist. He told me in so many words, "I don't specialize in Short Fiber Neuropathy (he does muscular Neuropathy) and there is only one of me, with his finger sticking up, and so, bottom line, there is nothing that ANY neurologist can do for you, you need to be treated by Pain Management". I told him, just because you don't specialize in SFN, doesn't mean there aren't solutions, having already explained to him, his predecessor wanted me as his patient, to manage all my medications. Fact is he is young and has a Lot of learning to do. #1, he doesn't know everything. Did I digress? Oh, he gave me the new word. Something that was so key to what was happening to me. As soon as my hand reached a certain temperature, it started a chemical reaction in my body, causing this dysgeusia, that has a metallic taste to it, and as I breath in and out, I felt it throughout my lungs and spreading rapidly. I know at this point, I have only minutes to shut this down, and that is by heating my body to a high degree. The transition into my house, with my alarms and door locks was done in a flash, and I headed to my bathroom where I had my German made over-size heater installed. Putting it on high, I set my hand underneath for over a half hour, as I laid on the floor also letting the hot air flush over my right side of my body. After I felt the transition of my hand back to normal, I knew I had beat it this time - mostly. It took three days for the dysgeusia to go away. If I hadn't been able to warm my hand, it would have spread up my arm, as it was starting to do, and eventually overtake my entire body in a nightmare of Cold Pain hell. I've talked in the past the difference between Cold Pain and Heat Pain, with different DNA proteins involved in each. Note, in past years, I would have a Bad event in October, for three years straight, which I won't let my mind describe again here, and that taste would not go away until spring. Like clockwork. I do wonder if part of my worsening symptoms this year weren't due to that one event. I am getting better, but I can't let down my defenses a bit.
I'm not even sure where last year went. That was before the event described above. I know it was very similar to the beginning several months of this year where I spent a great deal of it on my floor. It was a usual dance with me getting up, pushing myself to start another day. Coffee, of course, but as soon as I would start to do something, whether it was just typing on the computer or trying to clean, I would soon get overwhelmed and I grab my pain stuff, phone and hit the floor. I had a pillow and fleece waiting for this, but after dealing with the pain for an hour or two, I'd then fall asleep and wake up early evening and, oh my! I have to eat something. Then I would be preparing to go to bed, which I still needed. There were days, though, where I was able to do work on my hobby, Lapidary. I mostly make worry stones, as I think they can show off the stone's beauty, and, if you want, they have function. Not being all that good at it, I would spend hours on a stone, and oh yes, of course there was pain. We, with Fibromyalgia even when we might be clear headed, relatively, and aren't having waves of neurologic pain, or the worst that FM brings, still have bodies that have severe limits, and it's painful to the touch, but we don't want to be invalids (not that there's anything wrong with that). We want to be productive, to take care of ourselves, but there to, we have realities. If we do this, we won't be able to do that, and even worse, many times we know we will pay a price, sometimes huge, if we do a project, whether it be cleaning or making something. We may sometimes choose unwisely, but it was important to us at the time.
I've no real excuse for not keeping up with the site or group, other than energy, or lack thereof. I started many times, to write something, only to end up failing. I hope to start posting more with more options for the group as we await our ability to meet in person once again.
Again, I'm persevering after being called by my dentist office an hour and a half ago they being told by my insurance that I was Not Currently Eligible. I Called the insurance, waiting forever, just at first being talked to like I was nuts and like I was trying to get away with something. All I did was call last December and ask to upgrade my insurance, and then instead they cancelled it February. So, after this one effectively hung up on me, I waited again for someone new, and oh, my, this person understood me and got me over to yet another person in authority to correct this and allow the back payments, so the work I had done since February would be covered. My stress didn't know what to do!? So, I came back to this and here it is…
