I was plowing through another old stack of stuff, grinding away on the shredder and getting ready to move a little piece of furniture when I ran into some old measurements from 2012 after I lost that 50 pounds in 2011. I have since gained back 20 of those pounds, and this is the impact of 20 pounds.
Thigh- gained an inch around (ug)
arm- gained an inch around (ok, so I'm an inch bigger all over)
waist- gained 3 inches around (WHAT)
stomach- gained 4 inches around (no... this can't be right)
hips/butt- gained 4 1/2 inches around (facepalm)
That is 20 pounds of pure fight against sometimes twice yearly prednisone and this latest stupid gabapentin thing that screwed my diabetes to the moon and I'm still grappling that fasting glucose down to at least the high 90s 3 months later.
This has been my hardest year for diet and exercise since 2011, even though my blood work is super healthy, my diet is awesome, I'm finally sleeping the way doctors want me to, and I'm very controlled on nearly everything with as little medication as possible. Well, that's not entirely accurate. 2012 sucked quite a bit because I was still dragging to gym with so much challenge that I could barely handle nustep and basic lower core. But I was skinnier. Well, fat skinnier.
This is unacceptable.
April is always hard, so focus has to stay on controlling allergies. I've already cut out cheese, fish, and corn (I already ate very little corn anyway, because diabetic) because high histamine foods. I'm itching all over this morning for whatever unknown reason, and all I can do is keep taking antihistamines and avoid histamine triggers trying to stay off pred. Breathing is first priority, cardiac under stress is second, and everything I do is about avoiding developing congestive heart problems as I age through super spoonie challenges.
I've been around nursing homes and hospitals through other people's stuff enough to know that how much I weigh when I crash will be how difficult it is to care for me, help me move, keep my circulation healthy, avoid pneumonia complications, etc. I know I'm too young to even be thinking like this, but since I've already had my foot nearly in that door, I want to be more in control of how I finally do go in that door.
I lost the equivalent of a 50 pound bag of dog food, or 5 10-pound bowling balls. I've got 2 of those bowling balls back. I don't want them. Even if I'm in less pain and better health, this is still unacceptable. It's a quick slide back down a very slippery slope if I'm not careful.
As much as I loathe this part, I'm going to have to just start actual counting calories again. The first time around, it was simple. No special plans, no exercise, just stop eating after I hit 1500. That's all it took. 50 pounds melted off in 4 months with nothing more than that. I had incentive back then because my health was scary dismal and my food allergies became frightening, so now I'm looking for a new kind of incentive. I've got 3 other people in my house eating whatever they want, and one of them being 3 years old doesn't help. I'm not able to trick myself into believing I earn anything for achieving a goal like this (my biggest incentive has always been food, alas), and I don't have enough self awareness to really care what other people think of me in general, so it really is up to me to just own wanting this. So what do I cut out when I've already cut so much out that all I get for a treat is an ounce of chocolate chips...?
Looking at you, third cup of coffee with evap milk in you...
I'm feeling mean, so here's the most annoying Benny vid I've ever seen.
Ode to @bonenado making it through Easter surrounded by women on all sides, including mom, sister, daughter, granddaughter, wife...
I mostly stayed in Mo Creatures. Bunny helped me name a raccoon and hunt for chicken eggs and then we had a discussion about why a rabbit didn't have her name, so another player helped me make a baby bunny and we named it after her. Outside of minecraft, blurs of activity happened in spurts with quiet times in between while the blurs ran around seeing other blurs, lol. Between being autism spectrum and aging through fibro, even though I'm having a fantastic year so far, inside my mind I feel like I'm on a constant lag. My psychiatrist says what I'm feeling doesn't match what others observe, but I think it's because I'm just really good at faking y'all out, lolz.
Halfway through April and so far so good on allergies. This was always my big airway rescue month for years, keeping my fingers crossed this'll make my 2nd year in a row not winding up in ER or clinic for pred rescue. I've hit 100 3 times now I think on my CPAP score, meaning I'm making it 6+ hours with good mask seal and low apnea counts. I can tell, though, that central apneas are going to continue to be a huge deal if I take meds any time after 4 p.m., so I'm still excruciatingly med sensitive, and no wonder I spent 20 years being a super insomniac. I used to think I made it through being ejected from that wreck without a head injury, but it's coming up with my sleep doctor now that possible brain stem area concussion might be the culprit behind me not breathing in my sleep. All this neck, jaw, and lower skull work in physical therapy can't solve that problem, so as I age, I'll probably be higher risk for something as simple as not breathing in my sleep because my brain can't tell me to wake up and breathe, and CPAP doesn't fix that kind of apnea. It can, however, make sure other apneas are solved and bring my OSAT up, and more oxygen to my brain means more overall continued healing and health, and more healing means a better chance of my brain being able to make me breathe when I stop.
I have always felt I'm here on borrowed time, and like I'm racing time to get done what I'm here for. I've said several times during crisis "I'm not done yet." I've never said "I'm afraid of dying." I'm very much afraid of having to leave the game board before I'm done here. Life sometimes feels like a Monopoly board and sometimes feels like a Parcheesi board. My life feels like both, all mixed in with chess. (Imagine Parcheesi chess Monopoly...) I've thought this way since I was a kid. The reason I write so much on the internet is because I don't know when I'll have to stop, and I can't count on there being a 'later' to do things. Between autoimmune reaction disorder (anaphylactic reactions) and central sleep apnea, even really good days for me could be over very quickly. I have lived like this every day for many years, always knowing today could be my last day. I'm working very hard on increasing percentages, ratios, and chances, but sometimes it feels really important that I tell people I love them just in case.
By the way, I'm NOT writing this because anything feels urgent or imminent, lol. I used to go through horrendous anxiety attacks that were way worse for feeling like I'd die any second than this feels. I actually feel really well the last few months compared to the last ten years, but those who know me know I'm always ready for that other shoe to drop, because it's just a habit. I'm writing it because I'm thinking it. Being on CPAP has brought this to a much more #inmyface attention.
What a morbid Monday, sorry about that. I'd better go do some chores.
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.
Another rabbit hole to disappear down... If you think me being all over minecraft is bad, you've never seen me in a forum.
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*
Day 5 of cutting the beta blocker dose in half, and the most immediate thing I'm noticing is that I'm not heading for the benadryl, have actually nearly stopped taking it on top of the zyrtec. I've been told for years that beta blockers are bad to spike histamine levels, well, there you go. Hope ragweed season is easier later this year.
There is a fibro condition called costochondritis that I've lived with since the car accident, so pretty much my entire adult life. It is frequently mistaken for heart attack symptoms. I can't even begin to describe like it's like living with a condition like this while withdrawing down a blood pressure med, so I'll just go with sucktastic.
One of my target areas in physical therapy this week is the nerve centers and pathways from the base of my skull down past my left shoulder blade and across the upper front of my chest. Part of my symptoms stimulating that nerve area again is Lhermitte's sign (often associated with multiple scleroris, which I still scan negative for), documented by a surgeon a few years ago who refuses to even touch me with a needle full of any kind of relief because my medical history regarding adverse reactions is so long. The 'shock' really does feel like an electrical shock, it's very painful and makes you jump, and when it runs down the left side of your chest and arm during a costochondritis flare, it plays hell with anxiety and depression. I very seriously might never know if I am truly having a heart attack sometime in my life. I have been checked so often that I loathe to even think about another 6 hours of size 6 IV needle for CT scan, chest x-ray, EKG, tons of blood work, and if I'm lucky, MRI because other vague autoimmune related symptoms that also need to clear me for blood vessel problems in my brain, and if I'm really really lucky, something as stupid as a barium enema or vag ultrasound to check off possible referred pain. I don't get pain relief until that's all over, and by then I'm so worn out that it takes a couple of days just to recover from going into the ER.
So yesterday was fun. All that cute spiky pain across my chest, me very casually and gently working through all the stuff I've learned in therapy, and I actually got it under control.
I cannot repeat that enough for anyone out there looking for fibromyalgia of the chest wall validation and help in the dark of night. ASTYM therapy over 4 years and all the muscle stretches and nerve glides I have been taught actually worked to relieve costochondritis flare and Lhertmitte's sign.
If you are suffering with this kind of stuff, get a referral into physical therapy specifically for ASTYM and get to work on that. It taking 4 dedicated years was totally worth the 20+ years I've been living with this pain. As far as I know in my own area, I am the only patient who has stuck it out this long (physical therapy can be painful and the homework exercises can suck when you live with chronic fatigue and pain), and my therapists are excited about all the progress I've been making.
I'm actually sick to death of talking about pain stuff, so let's get back to minecraft. A couple of weeks ago I was trying to tunnel to 0,0 from the -8000s on MoCreatures and getting very wealthy doing it, ran into a new area with 3 villages really close together and took time out to set up protection and preservation protocols, like lighting and fencing, installing doors and planting the gardens. Once I did that I stocked up the store real good (/warp Rivyn111), and now I'm starting over with the 0,0 thing, except now I'm just running over land. I tried using my flying horse a couple of times, but I keep getting only so far and getting distracted because I'm a total minecraft sucker for every little thing, always have to stop and investigate, so I figure it's easier just running now. Oceans, jagged mountains, big patch of sunflowers, cities made of ice. I've survived all manner of attack so far, and during the night I just home back to my island to chop wood. I miss being able to teleport to coordinates, but at least I can 'home' and then 'back' when the sun rises instead of twiddling my thumbs trying not to get killed in multiplayer.
Also ran into another little village I'm taking time out to refurbish.
Yeah, you can see by the coordinates I still haven't gotten very far yet, lol. I'll get to 0,0, but the road trip and sight seeing are part of the fun.
Keeping an eye on #SnarkStock2016 this weekend, plus today is #Belmont, so I've got a full day. I'm also sketching out a work slot that I'm very excited about to come back to through the day in between multitasking, so if I'm not responding to whatever notifications, I'm probably deep in a timewarp.
~a week later~ Finally checked voice mails and emails. No wonder more protein powder hasn't shipped, my credit card needed to be renewed. Also wrestling with old lappy this week to stay on long enough to yield more vital information. Also getting ready for the Xanga renew thing. I'm still one of the major investors, so the money transfer for all my stuff will be pretty substantial. Also have tentative internet meetings on the table.
I hate begging off, but since I caved and admitted this was a hard week, I'm going to go ahead and let you guys know THIS WAS A HARD WEEK, YO.
Ok, back to stuff. Part of real life dealing is practicing on our relationships, and aspienado is still working on the honesty without dumping, especially when it's being prompted by some kind of mood swing or anxiety attack. I keep reminding myself I'm withdrawing from a med again, I've got spiky pain levels, and it's the month in my life where I always timewarp like crazy- I CAN DO THIS. THIS IS NOT NEW. All I have to do is just hang on for a bit and let time pass. That's all I have to do. Stick to a tight little routine with my laundry and dishes, keep myself distracted with work and minecraft, keep touching base with my people, and do my stretches. Part of my stretch homework this month includes all the muscles that attach to sternum in the middle of my chest to my shoulders on the front side. The referred pain I've lived with ever since the car accident is hilarious. No matter how documented my history, I cannot walk into any clinic or ER for pain assistance without going through rigorous testing first to rule out a heart attack. I've lost count of the ECHOs and EKGs and even the holters, most of it over this fibro pain, even though I also have legitimate heart history. Fibro is a bitch.
Doing my pec work, lol. I've actually accumulated enough stretch exercise material for my entire body over the last 4 years (first therapy session was August 2012) to fill up a 2 hour workout if I did them all back to back, and that's on top of a 20-30 minute walk. I've tried it a couple of times, there's just no way. I have to alternate days. Plus I have to warm up and increase blood flow to specific areas first before I stretch, totally commanded no cold stretching. There are several ways to warm up, like hot shower, heating pad, actual repetitive movement for a few minutes, but the easiest is just throwing a sweater into a dryer and then putting on the hot sweater. I'm a cheater, lol. But not always. As hard as it is moving around because the fatigue wall and tightness and stuff, I actually like moving around.
Ok, it's 5:30 a.m., I'm dressed, second cup of coffee going, staying focused on the basics of staying functional. Might see Bunny this afternoon, that will give me a target time to have a few things done.
Just focus and survive till the time passes to a different time. We can do this.
It took several years for me to embrace the somewhat daily discipline of touching base with myself on blogs. Once I got into the habit, it took another couple of years to embrace the interruptions that keep me from focusing on enjoying the brain workout of daily blogging. That's really what it is, isn't it? Writing something down every day is an exercise, and sometimes it's hard and sucks the same way that committing to a 30 minute workout every day does. So when alone time with one's brain creeping out into the soft static of the world Borg mind becomes enjoyable, something getting in the way of that can make a person feel kinda pissy. And then learning to let it go can turn it into work all over again when it's time to get back into routine. Routine iz hard, yo.
That's why I blog the way I do. I make it really enjoyable to come back because I would otherwise be so bored and frustrated with the written word that I'd maliciously envision visiting horrible consequences all over my laptop, either in forums or actually on my laptop. ZZztTTT There, you stupid keyboard, want some COFFEE? Can you keep up NOW??? See, if I had minions, they'd look more like spiders because I'm evil and would go on gleeful stomping frenzies.
I'd rather be cool, you know? Not just someone losing it and throwing things.
A wise man once said, "Don't dream it. Be it." I heard the playwright actually got that off a cigarette ad, but who cares.
You thought I was done, didn't you? I'm not done. I actually did do some writing over the holiday weekend. I've been noticing over the last 8 weeks that writing seems to suddenly have become remarkably easy. I'm no longer struggling when I sit down and continue painting my canvas. I was kind of joking about the whole thing through April, but I guess it was real.
I couldn't read until I got into the second grade. Thankfully I got a teacher who was all into phonetics. Suddenly words became a game.
My third grade teacher made sentence structuring a game. I began to write.
My fifth grade teacher made reading a game. I had the second longest bookworm in the class.
My sixth grade teacher showed me with a special projector that I'm actually a speed reader.
I figured out by high school that I can glance through books and accurately summarize them without being conscious of what I've read.
College was like a circus smorgasbord at which I excelled without understanding, and learned that my communication skills were dismal. I discovered a secret key and unlocked a door to a gigantic maze.
The internet was a joyous brawl without direction until I learned I can make and lose friends.
Blogs helped me practice in the long, dark nights after my world shattered and all hope was gone.
A psychologist helped me understand that my problem really is me. I saw myself for the first time.
I am Aspienado. I've worked long and hard to reach this place. There is no magic involved. I'm not that savant. (I believe we are all beautiful and magical.) Because I kept pushing myself into a routine, I am writing.
I'm writing pain.
And I'm writing joy.
And one day, Lord willing, you will see it. Time to GET BACK TO WORK! >=l
