Rockin' out 300 extra calories yesterday, thanx @bonenado. He came home with filet mignon, so it wasn't a bad thing, but still, heads up on the menu planning thingy. I thought I was done for the day...
Going in circles with Kaspersky this morning. I love Kas, but everything that requires attention somehow becomes a nightmarish chore. Ok, first world problems, I'm just still in that first bit of coffee phase, day 9 on I'll just call it neurontin (gabapentin) and I'm not exactly springing out of a dead sleep like Tigger any more. I miss that, but I hafta admit, I'm liking the actual sleep.
Nothing I plan is going right, so I'm calling it med adaptation and just letting it go today. Plus oozy eyes, @bonenado says he has already cut out some ragweed while he was doing yard work, so here it comes. Pollen.com begs to differ and says I'm having a beautiful, happy day.
So this happened.
No idea if that can happen naturally, but I've never seen it before. I didn't know if an admin was messing with me for a joke, sometimes I suddenly get glowstone dust thrown at me and stuff, so I lit it up to let them know I found it, just in case it was a howdy.
And I'm going to do tree experiments now and see if I can get saplings to grow into each other. One player on the server built her own cherry tree, I assume using apples (she had previously asked if anyone had a lot of apples), not sure how she did it but maybe I'll go snoop around a little bit on my flying horse and see if I can find it. Minecraft apple history is kind of funny, worth a read. Ok, I found tutorials on how to put apples on trees, lol. Someone made a fruit trees mod. An extension gives you incredible foliage varieties in single player. I might try that some day.
You guys didn't see me making scrambled eggs with bacon and cheese and getting a roast on in the crockpot during all that.
This next part is long, boring spoonie stuff. Just letting you know you'll either learn something or get really bored.
Kinda did a quick assessment with @bonenado before TV last night. I knew there would be another phase coming, like a Phase 2 kind of thing where I'd be back on permanent meds because nerve fail is no joke, and if my ship starts going down again, I'll do everything I can to stay afloat as long as possible.
In 5 years I'll be the age my mom was when it all started going down for her. By 6 years from now she was right side deficit and having loads of difficulty with her arms. I've already figured out the strokes didn't necessarily cause the complete arms/hands contractures by the time she passed, and that it's already happening to me and I haven't had a single stroke, so this is a genetic thing. If I hadn't started changing everything when I did, I might've gone down a lot faster than she did, and at an earlier age, so this is where it really hits a person how real survival is in the health care industry.
The phrase 'curl up and die' probably used to be a common actual thing. When I was in nursing school, one of the first things we learned was nursing home care planning, and one of the biggies is contractures. Ironically, my first light arm contracture started happening during nursing school and I never told anyone, since I knew what it was and had already been diagnosed with a condition that could be related to that happening. I figured out a way to hang a finger on a belt loop and keep that muscle stretched while looking casually normal, and used my good arm to carry my stuff. I never 'cured' it because that muscle, compared to the other arm, remained slightly more of a lump, but I did manage to keep it from locking into place and deforming my hand to a weird angle. I was in my late 30s when that happened.
Before I was diagnosed in my late 20's, my very first doctor, a really old guy on the brink of retirement, told me there was no cure and I'd be in a nursing home by 40 because my blood tests were off the hook, and he didn't know what to do for me. I'm sure he'd seen it all before all this new stuff showed up in the medical field and started changing the way we age through arthritic and neuromuscular conditions now. Actually, I probably would have been dead before 40 if I hadn't been persistent and found another doctor who smuggled 5 months worth of samples of a brand new nsaid called flurbiprofen to me because I couldn't afford them. I was so ill that I'd lost 75 pounds, positive ANA, high SED, and fibromyalgia was so new that it was still being called fibrositis. I lived in nonstop fever for well over a year, could barely walk, and was so miserable that I couldn't imagine making it long enough to see my little girl get through school. We know *now* I'm one of the more severe cases with all kinds of complications, but it was so bad in my 20's that I couldn't open doors (that was before handicap doors became standard) or walk up stairs (thank god for elevators), and couldn't even pick up loose change or pens and pencils that I dropped. I'll never forget another customer laughing at me at a register for dropping all my change, saying I was a drunk. He had no idea I was so sick all over my body that I couldn't even turn my hand over to count my change.
I lived a long time with all this without ever telling anyone.
So anyway, last night it hit me I'm actually in Phase 2 now of my survival plan. Phase 1 started in 2008 when I put together my care team (doctor, psychologist, chiropractor, neurologist, endocrinologist, physical therapist, psychiatrist), which took time (3-4 years), and cleaned off all my meds because they obviously weren't even slowing down my descent into hell. Took two years to get off the benzo meds, longer to get off the opioid meds, stopped all the muscle relaxers and pain killers, finally completely med free for a whole year a couple years ago except for blood pressure and thyroid meds. My health improved over time as I worked very hard reclaiming some functionality, because I had just about hit bedrock, not able to move well enough to even dress myself, and I wanted my life back.
Phase 1 was more successful than I dreamed possible. I have so enjoyed being able to shop for myself again, take care of myself around the house, even do a few things I couldn't do at all for years. I say enjoy... If you can imagine enjoying anything through unending nerve pain, but seriously, every day I am thrilled that I can move around and do things.
Well, I'm hitting walls now. Lots of walls. I'm seeing frustration in my care team that I'm not continuing to progress forward. I'm seeing some backsliding in my capabilities. Plan B for that is, of course, going back on meds to help me control going back under, using meds differently than the way they were used most of my life. This is Phase 2.
Phase 2 is a projection I created a back up plan around. I logically can't possibly sustain 'normal' with all the junk I live with, so even getting super healthy isn't going to cure it and it's all like I'm just fine again. I've reached optimal on everything now- blood tests, heart health (stress test A++, said it was like I was in my 30s), skin and vision health, even able to do workouts, and if you have followed since the first grandfortuna post on that (now private), you know it's been a very long road.
January 2013
This week was awesome. After 6 weeks of feeling like I was sliding backward out of control and having to dial down my workouts, I pulled off a whole 30 minutes at the fitness center. Made it to 20 minutes on the nutstep to warm up, still at work level 4, 60-70 steps/min, longest I've ever gone. Then kept the weights down at 20# to finish out 10 more minutes, longest total time so far. I left in pretty good shape, too. (Noobs who think that looks like I'm a total wimp, nasty car wreck yada yada, years of autoimmune flare ups yada yada, nerve damage and illnesses yada yada, life sux and watch me fly.) I'm still having to be careful about triggering fibro flare up in my neck and shoulders and spiking headaches when I do upper body core work. Thinking about talking to my doctor about going back into physical therapy for neck and shoulder exercise training when I see him at follow up next month. Managing to keep pain meds down to half a norco every 8-12 hours, really sick of meds after years of taking them just to be able to walk.
Was 20 degrees that day, which sucked.... I'm such a dork.
When I first started physical therapy, I could barely do 6 minutes on a nustep at level 3 at about 30 steps a minute, and it was super hard. Same with my arms. Just having the one on one in physical therapy was enough to keep me going back.
Anyway, Phase 2 is important. It's where I get back on meds in order to retain my current level of function reclamation before I lose it again, a sort of rescue platform to keep me (hopefully) tethered to this level I've reached so I don't sink back down. I didn't expect it to come on this soon, really thought I'd get a few more years out of Phase 1, but at least I have a plan B and not all is lost. I can't tell tell you how depressing it's been sliding back down all spring, but I've experienced such a drastic change on the neurontin this last week that I'm hoping I'll be able to stay on it and continue attempting more forward progress now.
None of this is magic. None of this is doctors telling me how to get my life back. That is not their job. This is ME deciding WHAT I WANT and HOW I'M GOING TO GET IT.
This plan has been in place for 8 years now and will be for the rest of my life. There's a Phase 3, but I'm not going there yet. Phase 3 is an 'if all else fails', a plan C.
So. I'm in Phase 2 now. It's still just sinking in. I'm not thrilled it came so fast, but I'm good with it, because part of survival means my team helping me with making choices. I have been saying no to neurontin for several years. I think my doctor is relieved I'm finally on it. I am one of the most stubborn noncompliant high pain patients my team has ever seen, and believe me, I'm getting cheered on now like I'm in some kind of marathon. They've seen a lot of people go down.
Last night was about stepping back and really looking at the whole picture so we can look at big picture going forward. My intention is to stay as functional as possible for as long as possible so Scott can continue to focus on doing what he needs to do to keep us financially stable. Before I put together Phase 1, before the whole disability thing, there was a bankruptcy, and I can't even begin to tell you what that was like while I was just realizing I couldn't fake keeping a job any more, and switching back to college was total fail because my health was spinning out of control. I've seen what poor health does to a marriage and the long reach it has on many consequences with other family and holidays and even just daily living. I cannot accept that I'm the one taking us all down. That's why I made the PLAN in the first place.
I live day by day. It's a thing I'm used to and pretty much take for granted now. No promises, no assumptions, I know I'm very lucky to still be here, and luckier still that I'm this functional. I know it can all go away really fast. I could get dumb again real quick, for starters. This whole brain thing is a race against time, something I've been saying since I came back out public.
I'm not alone. Every human goes through something like this at some point, any age, anywhere, any time. I'm watching a fandom age along with me, watching more fandom leaders 'disappear' with no explanation, watching others surviving on twitter and facebook and all over the webs. I like that I'm not alone. Thank goodness for internet.
This post is a drag. Sorry about that. My day isn't that bad, just putting this here to help me remember later.
Back to minecraft, lol. It's been another 3 hours since that 3 hour count up there. Safe to say I'm a super spacecase today. I need some good space music. I think this is my fave SPG song ever. p.s. I just renewed my Lexxperience domain for 5 years. LittleLexx.net comes due soon, saving up for that now. Aaaand another hour just passed... *hitting publish*
