on a scale of ten

Full Metal Pinky

I'm one of those people who doesn't easily identify with a user friendly pain scale. It was invented as a communication tool for patients undergoing medical assessment, and it's actually quite sophisticated in its rules of use.

click to see pic bigger

My challenge communicating my pain level comes in part from enduring so much pain for so many years that even I will assess myself in the 0-5 range on a good day if I'm not doing anything that aggravates it into a more immediate problem. Attempting to communicate that to every doctor I see with a hope that anyone else can help me learn to communicate my own pain better to someone who isn't in my body quickly becomes a dismal jaunt into futility, and aspie me often wants to shut down and not even discuss pain level so we can just move things along. My biggest challenge is communicating relative pain to someone who hasn't lived with continual nerve pain for more than three decades.

Why is this important? When  a person functioning with a nerve injury has a change in pain level that seems microscopic to anyone else (7.5 jumps to 8, for example), it might monumentally affect function around one's home. That doesn't necessarily mean we must jump into new prescriptions or pain shots or surgeries. What it means is that whereas I was coping with a string of bad days, I suddenly started dropping eggs on the floor or something because an arm got so bad I couldn't force it to keep doing stuff, or I started stumbling while I walk because I'm having trouble lifting my leg high enough to move my foot forward. Reporting changes doesn't mean I'm looking for handouts and fixits. I was so relieved to finally figure out how to verbalize "help me find a way to live with this better without me accidentally triggering it and making it worse instead of throwing another prescription at me", which translated to physical therapy and two years of wonderful relief and improvement.

Sadly, once that much improvement is reached in physical therapy, measured as range of motion improvements in mobility and strength level improvements in endurance, there is no 'need' to continue, and people like me can find themselves left hanging short of further improvement because health insurance isn't about personal training. If I want more I must cough up the cash. I can use what I've been taught and maintain at home, but trying to keep pulling $1800 a year out of insurance for preventive care to hold back an elective $50,000+ surgery and all its own months of therapy afterward is unacceptable to them. Next step is pain clinic, with not much more than a 50% hope that a very restricted amount of steroid shots will be helpful and stacks of horror stories in the search engines from people who suffered further nerve damage because of the shots. Lumbar Epidural Steroid Injections for Low Back Pain and Sciatica


Because I've lived with so much for so long and have made it through some really rough years to some much better ones without succumbing to shots and surgeries, I know that the subject of pain relief is very relative and subjective, and that making a mission of seeking pain relief can sometimes backfire. I've chatted with a number of people about their spinal surgeries. Some say it was the best thing they ever did. Some wind up on meth trying to handle even worse pain afterward because nothing else works. Some live with irritating tingling and numbness instead of pain, or develop new mobility challenges like limping. A few wind up back in surgeries for complications, and one person I know of wound up paralyzed and so messed up that years of therapies and consequential surgeries haven't improved his life.

Since I have held out this long enduring what others might never believe they could endure, I feel that caving to pain shots and surgery will be more about genuinely rescuing me from ultimate life threatening damage or actual screaming sobbing pain with me curled up on a floor unable to function without assistance than simply just making my pain go away. By the time surgery arrives, I intend to be thrilled if I wind up paralyzed, as long as the pain is gone. Can you imagine how thrilling that would be for me to never have to feel that pain again? I can see me reaching a level where I'd gladly trade the use of my legs if it really meant that, but I know better- life in a wheelchair isn't a breeze by a long shot, and there can be other complications from increased immobility.


Life is pain. Anyone saying different is selling something. I learned that from The Princess Bride. In that movie the pain scale goes up to 50. If I'm somewhere in the upper 30's, I tell people I'm feeling rough. As I cross into the 40's I might say I'm feeling terrible, and as it hits 45 I'm using the word wicked to describe my pain. If I'm using the word nasty to describe pain, I'm at a 48 on the threshold of 50 and about as close to blacking out or throwing up as it comes. A two or three day nasty level is fairly unbearable, but I once did six straight weeks of 48-50 that allowed me to sleep only ten minutes at a time, and only sitting up holding my head up with my fingertips in specific places. Brain scans were fine, no big problems popping up on the neck radar. MRIs are wonderful for assuring me I don't have scary stuff going on, but they don't show you anything about having an odd viral infection hitting a Lymie right in the ol' nervous system. After getting through that one, everything else I go through seems milder by comparison, even though someone else might find my daily pain level, that I would shrug off at a 3 on a 'good' day, intolerable. (I keep saying I'm holding out for an opium patch.)

On a scale of ten, my pain level today is fluctuating around the 8ish point range. I have moments where it drops into the 7s, other moments where 8.7 goes all 9.3 on me and I spend a hellish 15 minutes trying another trick I've been taught by someone who has a PhD in pain management. On weeks like this I get a lot of work done. I must move continually, distract myself continually, rotate through a pattern of up and about or resting, usually in 20 minute increments. If I don't want to throw up and go into throbbing headaches from the higher pain level, I must monitor everything I do, everything I eat, every move I make, and keep my brain racing full blast ahead of the pain.

I started slipping again over the last few weeks. Stuff got hard, depression sideswiped me, I lost my momentum, and stuff in my head got ugly. And then I found out I'm in new territory now. Things could get uglier. Harder. Dangerous... Time to brace for a loop in the ol' roller coaster.

I can do this. I've just gotta get my baditude back on.

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.

blinking in the light

I have never blogged about this anywhere. I've mentioned stuff in passing, but I've never really been honest. It is really hard to be honest about stuff sometimes when you get down to the very last thing you have left.

I suppose it's kinda like a really beautiful woman suffering from a life changing deformity or something. Or maybe it's like an athlete getting a career stopping injury. With me, Scott says it's been like Flowers for Algernon, only I started out super smart in the first place.

I have an awesome brain. It has gotten me through things that crumble other people. I got through a weirdly abusive childhood and skated past depression that would have most teens going down very self destructive paths. I have gotten through some pretty rough stuff as an adult that would have most people my age at the very least addicted to something. One thing that seems to shine during some of my therapy sessions with my psychologist is that I'm able to compartmentalize all kinds of things in my head.

I had a very nasty car wreck when I was 19. I've been dealing with hiding disability problems the rest of my life. I absolutely refused to admit or acknowledge I couldn't do some things for a long time. Maybe I'd just have to do them more slowly, or find other ways to get them done. Most people have never known the pain I've lived with, or know very little of it. Even Scott didn't know how bad it was the first 15 years we were married.

Things started crumbling apart in 2004 when I got Bell's palsy really bad. It wasn't typical at all, and between that car accident and an untreated Lyme infection as a teen, it would probably have been no surprise if I'd had a better doctor. I got very sick and had to quit work quite suddenly, but the palsy itself didn't show up for two more months. I couldn't drive for 4 months after it hit, and had ongoing pain and symptoms for years after the paralysis went away.

Along with the usual glitches, like losing the ability to taste my food or smell things properly, my migraines became so severe that I prayed to go blind and deaf if only it would ease the pain in the trigeminal nerves around my face. Over several years I lost the ability to do simple math or read more than one paragraph in a book at a time. I had to completely stop watching tv for two years. I managed to keep working for two more years, finding ways to hide my growing cognitive deficiencies. I even talked to my doctor about becoming a nondriver, because I was making such poor traffic decisions that I couldn't believe I hadn't had any accidents.

Whatever was going on also impacted my immune system. I picked up every little germ and blew it way out of proportion, taking weeks and even months to get over what most people handle in a week. I started having medication reactions and had a very scary reaction during an MRI to gadolinium contrast. I became so weak I could barely walk around my house for months, and eventually suffered an injury while trying to walk across my yard and couldn't walk at all without handfuls of medications for several months.

I knew in my 20's that I might have to face CNS Lupus. I was cleared of multiple sclerosis back then, but wound up getting other labels. I've spent my adult life hiding all kinds of medical problems from everyone around me. But in 2008 it got pretty clear I can't hide this any more. They kept saying it's not lupus doing this, I don't have lesions on my nerves or brain, but no one had a clue what to do with me because all the symptoms were there.

My brain fell out. I couldn't even hide my cognitive difficulties any more. My Asperger traits that I'd managed to sort of hide throughout my life surged forward and took over. By 2009 I was granted complete disability. At the time I was deliriously thrilled that I could bawl my eyes out over that, since I hadn't been able to produce tears from onset of the Bell's palsy until around 2008, and then only a tear at a time that shot nerve pain around my face like crazy. I seriously did not cry a tear for 4 years because I couldn't. I went through eye drops like you wouldn't believe.

By 2010 I had accepted that I'd probably never get my brain back. By this time I'd been on daily steroid for months and was crashing so bad on medication problems that I started getting off everything I could. Nothing was helping the pain, nothing was making it easier to live any more, so what difference would it make? It was all I could do to drive in to see my psychologist, which is about the only time I drove at all because the pain and cognitive difficulty were so bad. Scott bought all the groceries, helped me in and out of the shower, did everything for me.

I've been through some really hard stuff in my life. People I love have died. I don't travel well and can't handle car trips and vacations. I couldn't even get out in the sun for 10 minutes without breaking out in itchy boils. I couldn't go to work, or go have lunch with friends, or enjoy holidays. But I think the hardest thing I've had to face is watching my mind shut down. It's very hard knowing how dumb you have become when you sort of vaguely remember how smart you once were. The depression finally hit me, and it was so cruel.

I know now that I didn't have to go through all that by myself. I'm learning how to use my Asperger's to solve new problems now. I have an edge a lot of people don't have. I have my brain...

I'm learning that it's not the content of my brain that makes a person really smart. What makes a person smart is adaptability, flexibility, being able to use what you've got and create workarounds. I still have a really hard time with math. I aced college algebra on my first try taking the tests with an ink pen. Now I have to use a calculator to balance my checkbook, and I still get it wrong. The govt appointed Scott to be in charge of my finances. You'd think that's a given, he's my husband, but no, that means I can't legally be held responsible to do it myself. I still get confused in traffic, and get lost in stores. But something changed, and my brain is lighting back up again.

From 1 Kings 19:11-13 KJV - And he said, Go forth, and stand upon - Bible Gateway

1 Kings 19:11-13

King James Version (KJV)

¹¹ And he said, Go forth, and stand upon the mount before the Lord. And, behold, the Lord passed by, and a great and strong wind rent the mountains, and brake in pieces the rocks before the Lord; but the Lord was not in the wind: and after the wind an earthquake; but the Lord was not in the earthquake:


¹² And after the earthquake a fire; but the Lord was not in the fire: and after the fire a still small voice.


¹³ And it was so, when Elijah heard it, that he wrapped his face in his mantle, and went out, and stood in the entering in of the cave. And, behold, there came a voice unto him, and said, What doest thou here, Elijah?


I'm not a church person. I grew up in church, but I haven't been able to sit in one for years. I didn't put that quote there because I got any kind of revelation. It was more like I finally just let go and said God, you do it, I'm too tiny and I hurt too bad and I can't. Heal me. Make me good for people, because otherwise my life has become worthless.


I can't even begin to describe the last couple of years. It's been hard, and scary, but more like being belched out of a broken mountain and thrown out onto the grass, laying there blinking in the light, moving a little at a time, sort of remembering who I am.


All the things I have made in the past on the internet was me holding on through a terrifying avalanche. What I created was not important, but that I kept creating. What I destroyed was not important, but that I accepted letting go.


What I do now is me rejoicing that I have so far survived all of this and can once again create with joy. I wonder what I can get done before I have to let go again.   Right now just sitting up in the grass seems wonderful.

So a note in passing, in case anyone ever wondered, all the bright colors on dark background on most of my websites was so *I* could see my own work.