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Lynx's Lair
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Those who know me from long ago remember one me, who used to be able to laugh and joke a lot. "Bouncy" was one word used a lot. "Cute" was another, though some who used it made it sound more like a curse than a compliment.
Those who met me after the fibromyalgia really started getting bad knew a quieter, moodier me, prone to "wearing my shoulders as earrings" as I'd hunch from the constant pain, etc. It got so bad that physically I became a virtual hermit, only really getting out of the house for the chiropractor, the grocery store and such. My 2005 Celica is not yet at the 5000 mile mark for mileage, if that gives you any ideas of how bad it had gotten! (Meanwhile, I've put wayyyyy more "miles" on my keyboard than most folks do, during that time, escaping to the distractions of online worlds as a form of pain-blocking.)
Starting the Savella helped in the fall, but once I settled into a new baseline for the pain, and winter, such as it is, hit here, it was almost back to the same-old same-old. I'll candidly admit, after the fact, that I was getting close to being clinically depressed, due to so many years of constant, never-ending pain.
I'm still in pain. There has been no miracle cure. There is, however, a new me.
Sort of.
More like the old me, starting to return after over a decade of hibernation. The process will be a slow one, but the first steps were very noticeable.
I started up gentle Hatha yoga 3 times a week, starting at the beginning of June. Last week, I went mall-crawling for the first time all year, then went back and got a body wave (perm) the next day. Next week, I get a professional hair coloring done, to more properly cover up the grey.
And I'm doing it all with a huge smile on my face. I'm reclaiming the old me one gentle stretch at a time.
The next several weeks are going to be busy, with EQ2's Tinkerfest, the SOE Block Party, the SOE Fan Faire in Vegas, etc., but please, folks, help nudge me about mid-August if I've not started up a blog series. There are many out there with whom I want to share several fibro-related notes that I learned the hard way regarding massage, chiropractic, yoga, and even some food sensitivities that may help my fibrofriends out. Old me or new me, I'm still prone to procrastinating and getting side-tracked, and if I'm getting enough nudges, I may get enough "oomph" to get them written for you!
I have now been on Savella for 2-1/2 weeks, and I've gone from "cautiously optimistic" to downright "happy". My mood is definitely better than it has been for months, and the pain, while still there, is lower than it has been since spring. There is still plenty of room for improvement, mind you, especially on the pain front, but every little bit helps when you're dealing with a chronic illness that saps your energy and mood as badly as fibromyalgia does.
The blood pressure worries seem too be a non-issue, as my blood pressure is back in the normal range at long last. (This sort of helps prove that a chunk of my blood pressure issues are from the constant fibro pain.) 126/87 is the best I've seen for a while on the blood pressure front, and if I can keep it down, perhaps I can reduce the amount of blood pressure medication that I'm on.
The difference in mood and energy is very visible.
I regularly hit up the Alberston's deli for roast beast and meunster cheese. Often, I shamble through the store - eyes a bit glazed, possibly limping a tad if my hip is acting up, and so forth. Today, I practically bounced up to the counter, and was pleased to see one of the "regular" deli staff waiting to serve me. Somewhere in the depths of my often-fuzzy memory, I seemed to remember that his wife also suffers from fibro, and I was eager to share the recommendation. Sure enough, she suffers from lyme disease and fibro, so I suggested that she look into Savella. He commented on how much better I seemed, compared to my usual, and was not only glad to get the medication name, but also my doctor's name. (They're new enough to the area that she hasn't settled in with a good doctor for the fibro, and I'm pretty pleased with Dr. Shali.)
Time will tell if this will continue to help, but after this many years of coping, it is so very nice to have hope once again. I'm calling my doctor right now to update her and ask for her to prescribe this for me for the long run!
For those who have been following me on facebook for a while, you may already know some of this. For those who are just catching up with me now, as I slowly get the blog reformatted and resurrected, here's a bit of a recap.
I've been trying since mid-June to get a prescription for Savella, which became the third drug approved by the U.S. FDA for the treatment of fibromyalgia.
This year has been the worst year yet on the pain front, and I'm starting to have to really struggle to avoid slipping into depression. I know I have a lot of things to be grateful for, and that I'm in far better shape on some fronts than many who suffer from fibro (including many friends and relatives), but as my pain levels continue to peak without respite, and my energy levels and motivation hit what seem to be all-time lows, it is getting harder and harder to keep my moods on anything remotely resembling an even keel.
Naturally, the added weepiness and moodiness gets me irked at myself, as I remind myself that I am one of the "lucky" ones among the fibro community (no need for a fulltime job, no kids to care for, etc). Getting irked at myself, of course, triggers more moodiness, and ... you get the picture.
Anyway, I've been stubborn for years about taking as few meds as possible and "just dealing with the pain". That went right out the window this year, however, and I'm now taking darvocet daily, just to get through the day (and to get more than 4 hours of pain-filled restless sleep a night!) I need to at least try something to dig me out of this accelerating downward spiral. Even if it doesn't work anywhere near as well as hoped, or if I find I can't tolerate it (like my eldest sister, Annette), I will feel like I've made some progress in trying to get this illness back under control. (Attitude makes a huge difference when coping with chronic pain!)
So, I contacted my doctor's office for a consultation in mid-June, and finally got in to see her in mid-July. I was better-informed about Savella than she was, since it had only been on the market for a couple months. I mentioned that, other than a slight chance to raise blood pressure, it was looking far more promising than the other 2 medications that had been approved.
Oops.
You see, my blood pressure is a tad high. Constant pain can elevate it. Mood can elevate it. When you get pain and mood in a nasty spiral, well, even on blood pressure meds, things get a bit high. So, she decided I needed to take a second dose of my bp meds each day for a month, while she went and did more research on Savella.
Back I went to her office in August, after one rescheduling on the doctor's end, hot on the heels of losing Nutmeg. Yeah, not a happy blood pressure time.
My bp was even higher than it had been the month before, even with doubling the dosage of my bp meds. Naturally, she was a bit unhappy about this, and said that, while she really liked what her research had turned up on Savella, she didn't want to start me on anything new until my blood pressure was under control. She started me on a new bp medicine (while continuing to double-dose on the old one) and scheduled another followup for September. She'd also wanted me on a diuretic, but the one she wanted to prescribe had sulfa in it, which is a no-go for me.
September has been a tad busy for me with lots and lots of EQ2 upcoming content to test and write about for my site. Busy, busy, busy, with my brain trying to leak out my ears due to the sheer volume of it all. Not the best time to try to cut down on my stress so my blood pressure is sane, but I was managing ok.
One hour before my recheck appointment today, the dr's office called and rescheduled ... for the same day next week when the content in EQ2 that has been making me so busy is due to be published to the game servers, and I'm due to be running about in-game verifying last-minute changes and updating the site.
Oh yeah, my blood pressure will be nice and low then. {sarcasm}
What's next? Another delay until October while she tries me on some different blood pressure med? November?
The pain is getting worse as the months pass, which, I suspect, is counterbalancing any good that the bp meds may be doing for me. I can't see much hope of that changing at this rate.
Meh.
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