a day in the life

These are highlights. This is how blogging has helped me get through the 'brain crash', which happened in 2004 during Bell's Palsy (which is totally nontypical but may be related to being a carrier, as we shall see) and grew increasingly worse until it started getting better around 2012-13, and is still improving. Between the confusion of brain fog and memory deficit (which was a new thing to my eidetic memory), I was unable to keep things straight for a long time. Being able to go back through private blogs not only helps me remember stuff, but why I made decisions this way or that. Blogging made it possible for me to watch my progress through a plan to get healthy again, physically and mentally. It's been nearly ten years since the brain crash (first signs in Sept 2004, but puzzling because no visible signs of stroke, tumor, illness, or trauma.) Life still goes on. I'm so glad I kept a daily log because I honestly don't remember most of this until it is triggered by reading it back to myself, then I go Oh, yeah... For the curious, I'm a Lymie (first infected in high school) with Epstein Barr (from a wild mouse bite, yeah I was stupid and picked one up by the tail when I was a kid) and had a bad Bartonella infection as a kid, very ill with the measles in high school (probably responsible for surgically corrected arrhythmia years later), nasty car accident, autoimmune flare ups, severe fibromyalgia, a nasty months long systemic CMV infection in 2007, declared completely disabled in 2008, but because I'm a stubborn aspie, I'm doing everything in my power to get back off disability. It's a slow climb up a steep mountain, but I believe blogging is the key to planning, the climbing gear, if you will. They say life sucks and then you die. Well, I want my life to suck as long as possible.

August 18, 2007

•  
  

       Boy.  That was a tough 5 minutes after they pulled out.  Me and Twinkles bawled our eyes out before we went back in the house.

  My sploit is off to Texas today to her new life with her fiance.  Time to start her new job, look for an apartment, get married…

  This was a small part of the loading process…  Boy, my camera is getting bad.

  

  Of course, the sploit wasn’t weepy one bit.  Look at that grin!  She has techno-JOY!!!!  Ok, private joke.

  

  It was a little early for Twinkles, but she was a real trooper, walking in the door at 6 a.m. in time for bacon and good-byes.

  

  Thodin.  The yucky green car that has been part of our driveway for years…  Today is probably the last day I’ll ever see Thodin again.  I think they have plans to trade it in later.  For some reason, this picture gets me more than all the rest.  I have so many memories of moving the sploit to college and back in Thodin.

  

  “Ready, Houston…”

  

  One more quickie pic of my baby….  *snif*

  

  Backing out…

  

  Now Twinkles is crashed on the couch until it’s time to go to work.  I’m feeling a weird sort of blue on my big stupid pills.  The chicken is cackling.  The dryer is going.  I am trying very hard not to think about how badly I wanted to be able to go on this caravan trip with them.

  *sigh*

August 18, 2008

• Finally starting to feel a little more normal, yay!  Finished the antibiotic this morning.  The body spasms are quieting down.  Have been sleeping a LOT.  Just about caught up on the usual chores. 
• Watched the Two Coreys season finale this morning, had it dvr’d.  I couldn’t believe all the pills Haim was on.  They didn’t name them all, but after dumping several other bottles, he argued to keep the vicodin (label said to take 4 a day) and the xanax.  Geez, dude.  I can barely handle 1/2 a vicodin at a time, and I have serious medical issues.  Any time I’m offered xanax and valium I turn them down, point blank.  I fear how hard I’ll work suddenly moving furniture around by myself if they knock the pain away and I have no inhibitions.  Good way for me to wind up in the ER.  You know, I never realized until I watched this season of the Two Coreys that I really am a seasoned drug abuser, under the guise of fibro and lupus.  I’ve been fighting to get off the meds for several years now, and dealing with withdrawals and the shock and recovery my body has to go through on top of being ill, and I’m convinced that the world of chronics and terminals is a serious issue of medication abuse, sponsored by pharmaceuticals, insurance, and the poor doctors caught in the middle.  When I’m on all the same medications that serious drug addicts wind up going into treatment for…  Just because I have an excuse to take them doesn’t mean it’s ok. 
• Scoped out a few sites on epstein barr.  Good lord.  No wonder my doctor was so quick to give me that handicap tag.  I didn’t realize how complicated that one is, and it’s just one of many wrecking me up through my life.  I know I seem pretty aggressive sometimes about digging up info on stuff, but in some ways I’m still pretty naive.  Here I was apologizing to my attorney for wanting to start up a disability case last November when I was so ill I could barely stand up and walk a straight line.  I blame the Asperger’s, I guess it just takes awhile for things to process and really hit me.  I fought the disability for so long, not realizing how much support I would have had even 20 years ago.
• Haven’t talked to my dad in nearly two weeks.  Keep thinking I should call and make sure he’s still ok with Mom’s care at the nursing home, but something in me keeps resisting.  He was calling me nearly every day and sometimes crying and angry, and I had to keep smoothing things out.  Scott’s mom is now driving herself all over creation every day, gets the boot off her broken ankle in about a week.  She has stopped calling me every day.  Well, I take that back.  She called me a few days back to ask if our land line phones were out from the rain and I said yes.  She called back the next day to ask if I’d called in to report yet and I said no.  (I’m very literal.  If she’d wanted me to do the calling, all she had to do was ask.)  Then she called me the next day about the wiring in their air conditioning, and once she found out Scott was available he started getting all the phone calls. 
•   I don’t do phones well.  I don’t do other people’s ‘panic’ well.  I’ve had to get through so much on my own without any kind of support at all, it’s incredible.  It wears me out terribly, as an aspie, to have to handle other people’s stuff.  I feel like I’m still recovering from all that constant problem after problem after problem this last month.  On top of my own problems.

August 18, 2009

Family meeting at the nursing home set for Sept. 1st.  I have so many feelings conflicting around even just the need for this meeting.  I don’t even have to take sides to dread this.  I’m not even on a side.  I see both sides, I see that both sides have blinders on and won’t budge, and I see that it all boils down to me being the main arbitrator because I’m legally in charge of both parents.  I just wish my dad would stay home more.  He’s a good guy, but he just needs to relax and have more of a life than hanging on every breath Mom takes.  If I had known Mom would make it this long, I really should have gotten a lawyer on this years ago.  And her own private room.

Scott picked two Walmart bags of tomatoes last night, half from the big Shop of Horrors bush under my kitchen window, the other half from the bush that fell over two months ago in the flower bed.  When the coffee kicks in (not sure it this will work, the first cup wobbled me back into bed) I wanna get a cookie sheet out and roast a whole bunch to freeze back in little bags for future batches of settler’s beans and spaghetti sauce.

@ 11:30 a.m.

What a long day.  I’m in slo-mo.  It’s so bad that I wrote down that I took a pill, and 15 minutes later could have sworn I never actually took it.  Just writing it down doesn’t mean I took it… dang it.

And I can’t go back to bed because I finally wandered in there and stripped it.    It’s a good thing I’m so far ahead on food, because I don’t think I could cook a meal from scratch today.  I’d wander off in the middle of something and forget I was doing it.

 @ 1 p.m.

I’m willing to entertain the notion that I’m having some depression.  Took 4 hours to get that cookie dough mixed.  My brain shuts down completely every time I think about either 1- my next doctor appt, 2- the nursing home meeting, or 3- the disability hearing.  Ugmo.  Eating a warm cookie.  It’s helping.  Put half the dough into the freezer for another day. Watched a new episode of The Universe, they finally made a new one.  I would sure love to lose myself in just thinking about stars and galaxies. Decided to throw a good *what the heck* to the wind and threw mine and Scott’s pillows in the wash.  Scott’s is line dry only, but I’m going to throw it in the dryer anyway.  If he winds up sleeping on a ball, it might prompt him to go buy a new pillow after two years of saying he’s going to buy a new pillow.  I have no idea how old this one is, but it’s gross, and I’m tired of waiting.

August 18, 2010

• Today is chiro and the grocery store.  This will force me to get a shower.  I’m having the hardest time getting more than 2 showers a week in this month.
  That meaty soup yesterday turned out really good.
  No brain yet this morning.  See ya.

August 18, 2011

I scanned the crap outa the wedding book before Scott took it back this morning with our order, which is now only for show so other people ordering pix won’t think we’re awful parents, because we could easily print them out on our own photo paper now.  We’re just getting 3 pix, of the whole family, the 3 generations, and bride’s parents with the couple. As we were going through the book and noticing all the other family photos, Scott couldn’t help noticing how often *** and her current guy showed up, and how few pix we were in, and it became obvious that Twink didn’t make it clear with the photographer exactly who the family ~was~….

~~~~~~~~~~~~~~~~~~~~~
My perfect bow made it in the album.

August 18, 2012

I really think this weird bladder spasm thing is my lower back kicking off again. Been having problems with it ever since all the mess started up with Andy, then gram, then Scott’s stuff, and now I’m having trouble moving and bending again, and starting to get pains down my legs. Might have to start back weekly with chiro. Also thinking about getting back into core strength training for my spine. (retrospect edit- it did turn out to be severe fibro and was only relieved with many weeks of ASTYM therapy over several months- I can't even begin to describe the pain and the way it referred around nerve centers)

August 18, 2013

Day 7 of norco withdrawal +_+ 

I think the worst should be about over. Been a zinger week, nothing like going through opiate withdrawal on prednisone and round the clock benadryl. I’ve lost 3 pounds, at least. Hitting coffee a little early. 

Tonight is utterly sleepless, only 1 1/2 hours so far. Slept real good earlier in the week, surprisingly, probably all the extra benadryl, even though I was wired to the gills. 

August 18, 2014

*** got back home today, will probably retire now. Scott took his mom and Twink out to see him come in. *** got married Saturday, and after they were pronounced and kissed they locked light sabers. I heard her blade was red, which is Sith, lol.

I finally got a couple of weekends off in a row, and dang if I didn’t get in my bedroom with a forklift. Got that stupid dresser and armoire OUTA there. Scott says I can have a new dresser any time now, so maybe over this next week I can finish up the piles of stuff that have been amassing again since Twink got pregnant. I’ve been using a broken drawer on the floor for at least two years. Was supposed to get a new dresser a long time ago, but Twink getting pregnant and piling in here (rather her here than some place stupid!) and then moving around and then popping the kiddo early practically on top of me having surgery, and then keeping us busy every weekend (and more) since then, this whole last year has been like riding out a string of tornadoes. We’re exhausted. Anyway, I caught a second wind and boy howdy, my bedroom is getting a very badly needed makeover.

My nerves are quietly going into shock. Here we are again, a year later, not sure whether my blogs will disappear. Was hoping to have a little money this fall, but still not sure yet about Xanga renewing. I need to get this book wrapped up. I’m glad I didn’t meet my last two deadlines because I am really liking the conversations I’ve had about breaking it down some more, stretching it out, filling it in. Work of art. I need to do it justice. It’s not just another story being tossed out there, it’s my histoire philosophique. It’s me putting Camus and Lewis onto the same gourmet sandwich. I really do believe I can pull this off, but in the middle of all this other duress and another blog salvage…? I’ve always said I do love a challenge. My whole life has been like the Tour de France.

just dance

One of those days, been moving continually since 4 a.m., what I call racing the pain. Was doing fine yesterday, no probs picking up burrito and sitting on the floor with her, but later after she was gone I sat on the floor on a pillow and ~locked up~. So I took a pill, went to bed, slept great for almost six hours. That usually makes it all better.

Not today.

Holy cow.

So I'm simultaneously epic failing my original intentions but actually getting quite a lot done because keeping myself super occupied while this insane gridlock around a major joint works itself out trumps taking another pill and laying around all day and winding up with the same muscle results but not getting anything done.

Always something. Really looking forward to being able to move normally again. And sit longer than a minute. This post has been under construction for nearly an hour, but boy howdy, the chrome in my kitchen sink is really shiny now.

Moving on.

human error, medical records, and making our own decisions

Loving the new centralized medical records I have access to now online. I can see that just before Christmas in 2010 two inches was temporarily added to my height, and right after New Year's in 2011 a hundred pounds was suddenly added to my weight. My highest recorded blood pressure over 4 years was 194/92 and my lowest was 99/66. My slowest recorded pulse of 60 was on Valentine's Day of 2013, so I apparently wasn't a hot date that day. I can also see that my CMV test came back negative for reactivation, but you can see I am a positive carrier.

 

I've been worried about CMV reactivation since I got home from vacation in the middle of May, thinking maybe I got too run down. It hit me a few days ago that part of this weird bloating and pain and super fatigue *might* be the pain medication my doctor had me try last April and then take on vacation in May, which, yes, was a lifesaver, but now that I'm back home I can tell that it's a crutch and taking it every day might be causing some very unhealthy side effects. (I'm always the person who gets the rare side effects, and I seem to be hitting a jackpot this time.)

I was diagnosed with a liver condition called NASH some years ago after one gastroenterologist strongly advised me to stop taking Ansaid, which I'd been on for ten years, so I imagine it could be likely that a similar medication might irritate the crap out of my poor innards. So I stopped taking it, and whadayaknow, my tummy is deflating, eating isn't hurting any more, and my increased heart rate and blood pressure are coming back down. I was feeling so rotten that I even wondered if maybe I had a kidney infection, but I never got a fever or other symptoms for that.

I have to give serious consideration to weighing the pros and cons of meds since I have an inch long spot they watched on my liver for a couple of years, so here we go, time to wing it again, off the meds and just dealing head on with whatever hits me again. Beats living with feeling like I have pancreatitis. If you've ever had that or know anyone who has, you know it SUX. I'll take fibromyalgia and trigeminal neuralgia any day over that and my liver swelling up again.

So now that the big drive to Houston and back is over, I'm back in ASTYM therapy and menu planning around higher protein intake and lots of raw veg and salads, hoping to get past this fatigue wall I keep crashing into. Crossing my fingers that stopping the med solves the problem. Stopping meds has worked wonders in the past.

I don't advise cold turkey withdrawal for anyone who has been on meds for years, and I strongly recommend you don't do it without your doctor's knowledge. I've been through some nasty backlash withdrawals that had me going back for 'rescue' meds, but in the long run, I've been much healthier getting back off meds than staying on them.

Meds are awesome for short term rescues, but when they become bandaids they turn into epic fail, and a body can become so dependent on multiple meds to keep functioning that suddenly cutting them off can result in catastrophic events. It takes a lot of grit and planning to untangle and extricate oneself from handfuls of medications and find ways to get healthy despite being in very dire straits to begin with, but it CAN be done, if people wanna live bad enough. It's too easy to medicate and let stuff roll over you till you finally just die, but either way, you die in a lot of pain. Handfuls of meds do. not. stop. that.

There is a lot of pressure to take medications, and sometimes they really do help. I grew up mostly without doctors, partly a religious or belief choice my parents had, but that was replaced with gimmicks like you wouldn't believe. I still can't walk past certain sections in health food stores without feeling ill and nearly throwing up because of all the stuff that my mom poked down my throat as a kid. None of it cured illnesses, and none of it prevented more illnesses, especially diabetes.

Our bodies are very good at handling problems if we make sure they have the materials they need to do that. Science has already confirmed that good hydration, plenty of good sleep and rest, excellent nutrition, moderate exercise, and finding ways to lower our stress do more good than anything, whether we are on medications or not. It doesn't matter how much you wax your car, if you don't change the oil once in awhile it's going to start wearing down. Likewise, we can put on all the makeup and pretty clothes and lotions we want, but if we're not eating good food and running around half dehydrated from sugary drinks and excessive alcohol, we get gunked up inside and our bodies have a harder time working right. We call that growing old, but I have been reverse aging since I weaned off my meds and changed my lifestyle. No gimmicks.

This is hard, and I'm going to miss my crutch again. It's nice having a few hours a day where I don't feel so rough. But I have to be honest with myself, it's also scary to think I could slide back into that complacence where I pop a pain pill instead of getting up out of my chair to do my stretches and then move around getting a little exercise because I don't hurt quite as badly when I'm moving around. Pills make it too easy to be still. Medications make it too easy to accept less than optimal conditions for my body. One little pill every day is making me lazy and sloppy, and I'm watching all that hard work to better health slip away again.

It's a choice. I don't blame anyone for wanting relief in their lives. But I want to win the game. I'm going to be the one crawling out of the muddy ditch and capturing the other team's flag while the rest of you slobs laugh it up getting wasted. 


My way of whistling in the dark.