A non-update update

Still feel like crap.

Still tired of feeling like crap.

Still feel like this isn't fair.

Still want a break.  Seriously, nobody wants to trade for a few days? 

Still no date for team-training (even though I know they are working really really hard to pin down a date, and we now *think* it may be in November... I still wish I could get my countdown chain back up).

Migraine is still lurking in the background, as long as I take it easy, eat regularly throughout the day, and remember to take my meds and stay hydrated, it isn't bad.  But if I do one thing - one teeny tiny inconsequential thing - wrong, it's back with a vengeance.

For the third Saturday in a row, I went to a local therapeutic riding stable to volunteer.  I love it.  It combines the two things I am unbelievably passionate about: horses and kids with special needs.  But...  we have had horrible air quality problems in Spokane this month and my inhaler is all used up (I was desperately sucking on it today, hoping there was some residual medication in it) and even though I have begged my doctor to refill the now two-year-old prescription, no luck as of right now.  So I inhaled dust and dirt for an hour without my inhaler and my migraine is back.  Ugh.

I said something to somebody I know this week about having trouble breathing, and they were like "You're asthmatic?"  Ha.  I totally even forget about half of the things I live with most of the time, they take a backseat until it's one o'clock in the morning and I can't sleep and I'm wheezing in bed.  So yeah, still an asthmatic.  I have a whole host of sinus crap going on right now, but none of it is anything the doctors think they can treat (I beg to differ because I think a tonsilectomy would go a long way to improving my quality of life, and I plan to argue this point for the third time when I see my ENT in December... but I digress).

When there's something like Tourette's in your life that takes everything it can get it's grubby paws on and then some, anything else in addition to it is an unnecessary drain.  And having doctors tell you that they can fix something but don't feel like you are severe enough to warrant surgery is frustrating.  If all I had to deal with was asthma and unrelated sinus/breathing problems, I'd deal.  But when it's in addition to everything else...

Also, my eyes and one of my molars have a pulse.  Interesting, no?

I started researching this week ringing in the ears (tinnitus) and came across this phrase: cutaneous allodynia.  Basically, having pain where you shouldn't.  My ears have been ringing this whole migraine (not continuously, but often enough) and apparently it is a form of cutaneous allodynia.  I'm no stranger to the weird things migraines do (please tell me how it is possible to have the ends of your hair hurt...) but this ringing ear thing is new, and annoying.  Coupled with the usual pain in my teeth, pain behind my eyes, and other things that this migraine has brought (extreme nausea, dizziness), I'm sooo ready for it to be over.

September sucked.  Everybody say a little prayer that with the start of October this migraine decides to go.

(Oh, and Quincy is doing well.  He's learning all of his tasks and working hard.  I haven't learned anything new about him.)

A Book Review: Against Medical Advice

I recently (while stranded at school for 12 hours) discovered how wonderfully easy it is to go on Amazon on my iPad, purchase a book, and have it immediately delivered to my Kindle app.  Now... that's not to say I am transitioning to the Kindle permanently; I still have a giant bookshelf in my apartment with 50+ books on it that I re-read over and over again.  But, it's nice to have some books at my fingertips; books that I can just read throughout the day and not worry about stopping for class or needing to remember to bring it with me.

I purchased the book, Against Medical Advice, earlier this week.  Amazon said it was the "true story of one family's decades-long battle for survival in the face of extraordinary difficulties and a rigid medical establishment."  Sounds good, right?

It was recommended on one of the Tourette's groups on facebook and had pretty decent reviews on Amazon.  I was curious.  And I bought it.

And finished it within two days.  Seriously, this is not a deep read.  In fact, it seemed kind of juvenile to read through.  I know it was supposed to be told from the teenager's perspective, but it was co-authored by James Patterson (whom I've never read, but I've seen him on TV... ugh, book authors promoting themselves on TV, maybe there's a reason I've never read his books) and I figured there would be something of substance to it.  But there wasn't.

And I really was not at all supportive of how this family chose to deal with their son's Tourette's.  I'm going to begin at the beginning of the book, and work my way through the various instances that I found fault with since I was, after all, reading this from the perspective of an adult Touretter.

The book begins (spoiler alert) with the family bringing their teenaged son - by force - to an inpatient psychiatric hospital.  The son is an alcoholic, and as you read the book you learn that he has been drinking alcohol with HIS PARENT'S CONSENT since he was in his early teens.  I don't care what disability your child has, allowing them to drink to the point of passing out to cope with it is NOT a solution.  They bring him into the facility and then the parents get cold feet as the son is promising he is going to change on his own.  He's an alcoholic, of course he is going to say things like that.  The parents say they are leaving and taking their son with them and then are informed that by law, they are not allowed to leave with their son.  Something about how by checking him in, there was a mandatory 72-hour hold.  They panic, call their son's therapist who tells them if they say the magical words "We are taking our son Against Medical Advice," that legally, the hospital has to let them leave.  They go back and forth with the staff for a bit, sign the forms, and leave with their son.

I'm sorry.  But this boy was an alcoholic, drinking so much he was sick and passing out.  And he was taking heavy-duty prescription meds.  That's a fatal combination; and instead of going with their decision they made while clear-headed and not in the hospital, they let emotions rule them and take their son against medical advice.  I don't agree with this choice in the slightest.  He was putting his life in danger continuously and had been doing so for years; alcohol and prescription drugs is beyond dangerous, this family is lucky they never ended up at the hospital pumping their son's stomach.

The book talks an awful lot about how he tried 60 medications and none of them worked; some even made him worse!  About 15 or 20 of those medications were supplements or vitamins, or over the counter things like Benadryl.  The book chronicles each medication taken in the back of the book, and yes there are upwards of 50; but here's the thing.  There are only so many classes of medication to try; I myself have tried 4 different classes of prescription medications (anti-hypertensives, anti-anxiety, anti-convulsant, and anti-psychotics).  The kid in the book tried a few more classes than I ever did, but it wasn't as though he was taking 60 different medications.  Medications in the same class work similarly, and in my opinion, once I've tried two or three, I'm done with that class of medication.  I'm done pumping poisons into my body that don't work.  This family kept pumping their son full of medications, including Risperdal for a very long period of time.  I was on Risperdal for 48 hours; the boy in the book is on it for months (or years... not sure which, the book moves chronologically through his life very sporadically).  He takes the pills in varying dosages, taking extra medications to "knock himself out" or preemptively taking more pills on days he wants his tics to be lessened.  I don't know whether this was "against medical advice" or not; but I do know when I was on these pills it was very regimented.  I had to take so many miligrams at certain times every day; the only pill I have ever been prescribed to take non-systematically was Ativan, and even that I am only supposed to take 0.5 mg of (a teeny tiny amount) in a 24-hour period, no more.

I don't know if this boy was actually taking pills as haphazardly as the book makes it out to seem, but my opinion after reading the book was that his medication habits were reckless.  And dangerous when you add alcohol into the mix.

Another big problem I had with the book was that the main character sounds very entitled.  In his opinion, people should give him a pass for having Tourette Syndrome (along with comorbids).  I use my Tourette's as an explanation for some of the things I do, but never as an excuse.  The boy in the book gets a one-on-one aide during high school because he is supposed to be confined to a wheelchair (he is falling down a lot and the school district does not feel comfortable with him walking around campus) but acts reckless and dangerous in the wheelchair, so instead they get him an aide to walk next to him at all times, take notes, etc.  The boy is also, at this point in time, chain-smoking cigarettes and talks about how he can't go an hour without smoking.  He leaves class one day without his aide, and goes outside to smoke (still on campus grounds).  His aide, whom he thought was remaining in the classroom, follows him and reports him for smoking on school grounds.  The student then goes home and sends a threatening email to the aide, in what he writes is a "rage attack".  He is almost brought up on charges, and ends up suspended and when he returns to school he doesn't have an aide anymore.

I'm sorry; but if you break the rules, regardless of whether you have a disability or not, you broke the rules.  Yes, in special education we make allowances for students whose disabilities cause them to act in ways that may go against school rules, but there are still consequences for their actions.  This book makes it seem as though this boy and this family expect there to be no consequences for his actions, regardless of how inappropriate they are.

The entitlement continues throughout the book.  He sounds petulant and "whiny" the whole book.  The theme of "but I have Tourette's" continues throughout his entire life.  Including when the school district lays out their very clear and concise argument for why he should have to repeat his junior year of high school, including the fact that he was missing multiple classes, turned in no assignments, and as far as the district was concerned, was not doing anything on his own time to make up the work.  (His parents did send him to a boarding school for students with special needs during his junior year, but he only stayed a few weeks before dropping out...  Seriously?  He was given the chance to make up his academics, and he threw it away.)  His mom makes a very impassioned argument in the meeting about how he made up a lot of schooling at this boarding school, about how he took online college courses in computer technology, and about how he did a wilderness experience for troubled kids (which she argues should count toward his physical education credits).  And then the clincher; she pulls out a folder of all of his missed assignments from the previous school year that she found in his room.  Again, they expect that because he has Tourette Syndrome along with other things, that this should automatically mean that all of his late work should count towards his missing credits.

I have never understood students who do the work and won't turn it in, but regardless...  I have taught in general education; and I had students who wouldn't turn their work in.  There are ways to help them remember homework assignments.  In my opinion, this mistake fell both on his teachers and parents.  His teachers should have been reaching out to the student, and if that didn't work, his parents to get his work turned in if this was, in fact, a manifestation of his disability.  When he had the aide, this should have been a non-issue as the one-on-one aide should have been responsible for reminding him to turn in his work.  And his parents should have been keeping up with him.  But nobody did and when push came to shove, his work remained missing.  (For those of you wondering, they do eventually pass him on to his senior year.)

He is also given or allowed to drive a motorcycle dirt-bike-made-street-legal.  I don't understand this one either.  I don't think somebody with severe Tourette's should ever drive a motorcycle; it is so easy for just one tic to slip in so quickly, and on a motorcycle this can have disastrous consequences.  In fact, they write about an incident in which he takes his glorified dirt bike out one night in the dark and pouring rain, and gets stuck on the freeway, speeding, unable to will himself to and too scared to exit (he has severe OCD as well, and I think this was one of those incidences).  Every time I get behind the wheel of a car I am making the decision to drive; to be careful and aware of my tics; and to be cautious, even if it means taking longer to get to my destination.  I try my hardest to drive away from other cars on the freeway, staggering myself in the empty windows, so that if (heaven forbid) I do tic and my truck swerves, it is not into anybody.  Driving a motorcycle with Tourette's is the height of recklessness and in my opinion endangers everybody else on the road.  And I don't think anybody could ever change my mind on this matter; I wouldn't even be a passenger on a motorcycle for fear of what my brain might do.

And then there is the issue of his "friends".  The drug-addict, marijuana-smoking, alcoholic, prescription-drug-stealing friends.  The ones who have casual sex and get into physical fights.  The friends that his parents prefer he hang out with as opposed to be alone.  And I can kind of understand that, but at some point as a parent you should draw a line and kick the drug-addicted friends out of your child's life.  And when the son and his friends throw a party in the basement and one of the kids passes out from alcohol poisoning (presumably, the book says he was catatonic on the floor and temporarily non-responsive), the dad - instead of bringing him home or to a hospital - puts him in the car of some of his friends who happen to drive by after making sure that the people in the car "weren't stoned".  Wow, real winners.

The book ends in a completely unsatisfying and un-explanatory method.  He literally, wakes up one morning and doesn't want to tic anymore.  And that's how the book ends.  The "most severe" case of Tourette's and OCD and anxiety that his doctor's and specialists had ever seen, just wakes up one morning and is control of his body.

I think you know my thoughts on this, but in case you've missed it, here they are again.  If one more person tells me that their friend's uncle's cousin's nephew's friend had Tourette's and outgrew it, I will scream.  This does not happen.  In fact, there was talk recently on a facebook group about how 100% of people never truly "outgrow" this.  Tourette Syndrome gets worse in puberty, and then appears to get better after the onslaught of hormones is done with.  Adults don't have specialists to go to anymore, because it is viewed as a "children's disorder" - much like Autism is these days - and by the time someone reaches adulthood with this, you have found a medication combo that works or have coping skills that work.  I see a pediatric neurologist, and am one of his very few adult patients, when I move away from Washington, I honestly don't know if I will continue seeing a neurologist or not seeing as they are so few and far between.

This book is supposed to be a window into life with Tourette's, but for me it didn't really seem to be that way at all.  There was extreme anger, extreme prescription drug use, and extreme alcohol abuse.  I truly hope that my blog doesn't read that way.  I am so thankful that I can see, walk, talk, eat (most of the time) and do things like work and drive, that only very rarely do I get down in the dumps.  And I know better than to not self-medicate with alcohol or prescription drugs.  Living in my brain is extremely frustrating - all the time - but you get used to it, you pull yourself up, and you move on.

So my opinion?  If you want to learn what it means to be a Touretter, save your $9.99 and just read my blog. :)

You're Invited... to my pity party

This week sucks.

My health has been in the crapper for three weeks straight not (concussion - cold - migraine) and I can't shake the fact that this was supposed to be My Week.  That I was supposed to be meeting my hero this Thursday and beginning team training.  That by this time in two weeks I'd be on my own with my new partner.  That my apartment is supposed to be filled with dog beds and toys and expensive dog food, not crumpled up used tissues.

I've been trying to find the positives, but in a situation that really isn't positive that's really hard.  Once in a while I think, Isn't that nice that I didn't have to worry about getting a dog ready today.  Or, Wow, I was late to class this morning, can you imagine if I had to wake up extra early to get a dog ready too?  But this isn't a positive situation; this is life and there is nothing I or anybody else could do to change this, but still...  It sucks.

My spoons are all gone from feeling like crap and it's times like this that leave me wishing I had the energy and inclination to do something instead of just thinking, I am sooo grateful I have no work today.

Last night sucked.  I was pretty convinced for a while that I was going to end up in the Emergency Room because of the pinched nerve in my neck.  I haven't even done anything recently to aggravate it, but I was experiencing the tell-tale deep ache in my arm that normally precipitates the full-blown pinched nerve.  And I swore the last time it happened that I am not going through that pain again.  If it happens, I am going straight to the ER because I can't stand the thought of experiencing that kind of pain any more.  And the worry of ending up in the ER last night or early this morning, sent me into a tail spin.

I was indulging in the It's Not Fairs, something I normally despise people for saying.  I think it is one of the most selfish things that can come out of somebody's mouth, but nevertheless, I was fully immersed in the "It's not fair" way of thinking last night.

I was in pain.  My skull felt two sizes too small and I still want to gouge my eyes out anytime I step outside without sunglasses on.  I was fully ready to chop my left arm off rather than go through the pain of a pinched nerve again.  And then to add insult to injury (literally) both of my calves are screaming and have been charlie horsing with no provocation for days.

I'm tired.  Physically and emotionally.  And this is one of those weeks that I wish I could Just Take a Break!  Just a 24-hour break; one day really.  I'd even settle for just the waking hours of the day, I don't need a whole 24-hours.  One day where I'm not in pain.  Where I'm not tired.  Where I'm not fighting my brain every minute of every hour.  One day where I'm not the girl who is overweight because of medications.  Where I can go out with my friends and not pay for it the next day with the worst migraine I've had all year.  A day where I can be completely, blessedly, normal.

But I don't get that.  When you have a chronic illness or a life-long disability, you don't get a break.  And that's the hardest part.  If I could have a break, even if it was just one day a year, it would be sooooo much easier.  One day where I don't have to worry about my spoons, where I don't have to plan every decision around the Tourette's.  I never get a break from my life.  Once in a blue moon, I get these brief moments of peace.  Where for just a moment, my brain stops.  Where my body isn't moving or threatening to move or thinking about moving.  Where I'm not self-restraining.  Where everything is just still.

And it's unbelievably, remarkably, beautiful.

To feel that complete calm, to realize I don't have a tic urge.  That I'm not blocking or restraining, I really just don't want to tic.  When these brief glimpses into normal happen, I'm lucky if I get more than 30 seconds.  I'm lucky that this happens at all; but I can't tell you the last time I had one of these "breaks".  I can tell you I cried my eyes out when it happened because it isn't until I get a break, that I remember what it would be like to not have Tourette's.  To have my brain only focus on what I wanted it to.  To not have to fight for every minute of my life.  To not be in pain.

I forget that everyone doesn't live like this.  With this constant turmoil in their heads.  I forget that what I go through everyday, most people will never have to experience.  And having those glimpses into what life could be like, is worse than never remembering at all.

I'm tired of fighting.  Tired of being tired all the time.  Tired of being in pain.  I'm out of spoons and truthfully, at this very moment in time, I don't think I'll have the spoons to make it through this week without another migraine or breakdown.

...Anyway, enough self pity for now. Because I do have good news.

Like, really good news.

Really, really good news.

I heard from the director of Heeling Allies about Quincy. He is doing really well learning his tasks. She said that he is doing really well with paws up and over. If you remember, over was the command that Owen was having so much trouble with; these dogs are picked in part because they are submissive (they have to be as a service dog) and placing them in such a dominant position can be tough.  Quincy though, is doing really well with these commands.  These are two things that are super important for me; the deep pressure is going to be critical in helping me to gain control over my body in situations where I can't manage it on my own.  Darcie even said that once they get him in an over, he stays put regardless of how they are moving underneath him.  Which is great!

Quincy and his little sister Gretta (and JJ in the corner)

He is getting used to the mobility harness I will be using with him; because it's a new piece of equipment that they weren't training him to use before, it's (naturally) taking some time for him to get used to it.  She said that because when he walks, he walks with a side-to-side movement it is causing the harness to move from side to side and he isn't so sure about that feeling.  He doesn't dislike the harness, but he's not so sure about what it is telling him to do either.

Quincy does not however, want to pick up his leash. :)  I think this is really sweet; he is a retriever but apparently respects his leash so much that he won't pick it up for them.  I've already bought an over-the-shoulder leash that I can use completely hands-free, so for me, picking up the leash is an added bonus that I should hopefully never need to ask him to do.  Hypothetically, if I drop the leash because of my tics, no, I won't be able to pick it up.  But... I think that by using the hands-free leash I should negate that happening.  Quincy won't go anywhere when you drop the leash, but he won't pick it up either.

And that's something I would feel comfortable working with him on anyway after team training.

Darcie said that Quincy is very sweet and loving, and that he nibbles to show affection, just like Owen.  I don't have any updates on how Owen is doing, but last I heard he was feeling much better on the medication.  When I hear something about him, I'll update everyone.

~ ~ ~ ~ ~

FOR SALE:

One broken down body; overweight and in pain.  Brain malfunctions 99.9% of the time.  Will throw in anxiety and migraines, free of charge.

Free to first to inquire, OBO.

Spoons

Before going any further; I want you to read The Spoon Theory by Christine Miserandino.

















Did you read it?










All of it?

That's okay.  I'll wait.










Okay good.  Now this blog post will make some sense.

So I know I don't have a chronic illness per-say; but what I have is chronic.  It's a syndrome not an illness, but it affects me in the same way; a way in which I don't think I will ever be able to illustrate as eloquently and accurately as Christine does.

When I wake up exhausted it isn't because I have Tourette's; it's because of what the Tourette's takes from my body.  The constant movement.  The pain.  The making a fool of yourself in class.  The not being able to sleep at night because your brain JUST WON'T STOP.  That isn't the Tourette's, it's called "comorbid" conditions.  What you have in addition to or because of the overarching diagnosis.  No, exhaustion isn't disabling; but it sure makes my day much harder to get through.

And weeks like this one?  Where I've had a mild head cold for about a week; bad enough in the beginning I had to take Nyquil that I'm now weaning myself off of (because if I go "cold turkey" I won't sleep for days)?  It took me 45 minutes of hitting "snooze" this morning to get up.  It's a miracle I made it to school dressed in appropriate clothing and with everything I needed to get through my 12-hour day (though I was 5 minutes late to my 8am class).

The morning is full of choices of how I want to spend my spoons.  I don't have the luxury of showering when I wake up, even though I know I would feel more awake if I ever managed to.  My brain and body move so slowly in the morning that I can't plan to shower when I wake up, because the likelihood of me snoozing for an hour is too high.

I hate breakfast (love breakfast food, just not at breakfast times).  If it were up to me, I wouldn't eat anything until 10 or 11 o'clock.  But I have to take my medicine (which in the morning includes my migraine meds, multi-vitamin, vitamin supplements, and a green tea supplement).  Each one of these things is vital to my health; the vitamins help me stay healthier longer, when I do get sick it can take weeks to shake a simple cold because my body is so run down all the time.  The migraine pills are self-explanatory; if I skip my meds in the morning I will have a migraine by 2 o'clock in the afternoon.  The green tea supplement is for two reasons; one, to help me wake up in the morning and two, to help get my metabolism started in the morning (because the 6-years of prescription pills screwed up any chance I had at a normal metabolism).

Sunday morning I gave up about half of my spoons in one split-second decision.  I was getting ready for my first day of Sunday school, and while I had plenty of time to get to work and prep my classroom, I still wanted to swing by the store for some items I had forgotten but needed to teach.  So I had to plan an extra 30-minutes into my morning, just in case the store was busy.  I was ready and had my breakfast (toast) wrapped up in a paper towel with my teaching things by the door.  I realized I hadn't taken my medication and instead of throwing the pills in a plastic bag to take when I got to work, I took them all in one swallow.  I was wide awake, and I figured I would be eating breakfast in less than 5 minutes when I started driving.

I didn't even make it to my truck in the parking lot before I started hurling.

I was shaky and nauseous for the whole morning.  Afterwards, I ate way too many un-filling Jimmy John's veggie sandwiches at the in-service we had after work, and I barely made it home before crashing on my couch.

When I should have been saving my spoons for work and driving, I threw them away on a quick fix for my medication.

Luckily, getting dressed in the morning is pretty easy.  I have sweat pants or jeans.  And I pretty much just pick a top or sweatshirt depending on the weather and go.  But I do know what it is like to plan your outfits based on your bruises.  My legs are covered in mystery bruises all the time, some of which I think are from cramps (or at least, sudden cramps that hurl my body into inanimate objects).  I have bruised my arm from fingers to elbow and had to wear sweatshirts in the summertime to hide them.

Sometimes my hands won't work long enough to put shoes on or do up buttons.

I have to make choices about when and where I drive.  I don't drive (if I can help it) after 7:30 at night.  If I'm not heading home by 8 o'clock, I'm in trouble.  When I do have to drive home late, I take the back roads so I can drive sloooow and steady.  I have to drive under or right at the speed limit.  Can you imagine if I got pulled over by a cop?  I have heard of people with less severe disabilities when it comes to driving having their licenses suspended when they get pulled over.  I can't afford to let that happen.  I talk to people on the phone (bluetooth!) or sing to the radio or talk to myself when I drive so that my brain is preoccupied with something else and doesn't have the opportunity to think about ticcing.

I have to make choices at school about how to spend my spoons.  Do I sit in the front of the class and try to take notes like everyone else?  Do I stay in a class when all I want to do is stand up and leave to let the tics out?  Do I sit in my chair or stand up and pace?  Each of these choices costs a spoon.  And because my education and my classes are important to me, I want to ensure that I am in class participating as much as possible.  So there go some more spoons.

Do I go home in between classes?  (Minus some spoons for driving, but plus more than I would lose for going home to decompress and rest.)  Or do I stay at school and do schoolwork all day?

Do I go straight home at the end of the day or do I run an errand that I've been putting off all week?

Was I smart, and do I have dinner prepared at home?  Or has this week been so hectic that my choices are to eat out or cook dinner?  Do I have the energy to cook dinner?  Do I have the energy to deal with going somewhere for food?

Do I even want to bother with dinner at all?  (Minus some of tomorrows spoons.)

Do I stay up late at night and do schoolwork I've been neglecting?  Do I stay up and work on items for my Etsy store?  Do I crash on the couch and zone out to Friends re-runs?

For me, going to bed early isn't an option.  I don't sleep well as it is; the last thing I need is to be waking up at 4 in the morning or lying in bed for 3 hours unable to fall asleep.

Every single day is full of choices that I have to make based on my disability.  Getting up and waltzing out of the apartment doesn't happen.  It is a calculated decision on where I have to be that day, how long I have to be there, which route I am going to take when I drive, and the list goes on and on and on.

And most of it is second nature by now.

When I read The Spoon Theory the other day it reminded me that not everyone lives their life in this manner.  That for most everybody else, this decision making process isn't "normal".

I don't simply have the choice to go out with friends at night.  Going out at night means I am giving up a lot of spoons the next day.  Means sleeping in a few extra hours to try and make up for the lost energy.  It means not being cognitively "all-there" the next day.

I don't just "run to the grocery store".  I have to make lists because I can't remember from one minute to the next what I need, and even then the lists don't always help.  I spent an hour in the grocery store last week after my concussion and still ended up with nothing suitable to make meals out of.  I try to plan a week's worth of meals around one trip to the store.  But then I have to prep and cook everything on the weekend when I have more time and more spoons, but that doesn't always work out.

I don't get to spend my weekends with friends or catching up on important school work; I spend them crashed on the couch trying to catch up on rest or just preserve my spoons for next week. 

I don't just go to work out.  It's a calculated plan based on how I feel now, how much I have to get done the rest of the day, and how I think I will feel tomorrow.  I wish I had the energy every day to be at the gym, but I just don't.  Some days I can barely make it through my day without the added stress and exhaustion from the gym.  Today?  I made the choice to do schoolwork because I have been running low on spoons lately due to my cold.  Tomorrow?  Well, tomorrow I don't have classes and because I did so much work today on campus, I should be able to spend some spoons at the gym.  Thursday?  We'll have to wait and see.

I am hoping that Quincy can help me save some spoons, or at least give me more to start with.  That with his assistance, some of these decisions I have to make every day won't end up costing me a spoon.  That he'll help me get some spoons back mid-day if I spend them.  I won't have to go home to decompress; he can help me do it on campus.  I'll be forced to make sure he has everything we need before leaving the house, and in doing so maybe I can be inspired to make sure I have everything I need too.  He will be the reason I have to leave my apartment some days when I would rather stay inside, costing some spoons.  But he will also help me get spoons back by sleeping better at night.  (Yes, he will be sleeping in my bed... as long as he wants to.  I have noticed a distinct difference from when my cat sleeps next to me or on me at night or when I have my parent's dachshund sleep with me when I visit them; something about having an animal touching me forces my brain to chill out and it leads to me sleeping better.)  And maybe, I will end up with enough spoons at the end of the week that I don't have to hoard them all for running errands and work, but I can actually use some on going out and being a more normal college student.

Scar Tissue

My therapist said something to me the other week that really resonated with me.  (And you would have a therapist too if you had everything I have going on inside your brain, so I don’t care who knows this about me.)  He was talking about scar tissue.  In the metaphorical sense.  But as I’ve been thinking about it, my scar tissue isn’t just metaphorical.  It isn’t just psychological.  It’s physical too.

All you have to do is take a look at my x-rays (which if I ever get a hold of, I’m putting them up as permanent proof for anybody who wants to disagree with the severity of my Tourette’s).  I have some serious “scar tissue”.  Maybe not literal scar tissue, but things that I have caused through my Tourette’s that will never heal.  Let’s start at the top, shall we?  My neck curves the wrong way.  Everybody’s neck curves one way, but mine is ornery and curves the other way.  And maybe that’s genetic more than tic-related, I don’t have pre-TS x-rays to compare it to.  But I’m pretty sure that my C-1, -2, and -3 vertebrae problems are tic related.  (For those of you playing along at home, those are the top three vertebrae in your spine that connect to the base of the skull.)  See, these vertebrae aren’t curved like they are supposed to be, not even in the wrong direction.  They are straight, one right on top of the other.  And they aren’t supposed to do that. 

Everything in my neck is compressed together.  I couldn’t tell you what it’s called, but on my x-rays there’s a lot of white spots (and no, it isn’t bone).  Stuff on the bone that alludes to constant degeneration and wear.  There’s also a point a little lower down in my neck where the vertebrae are pinching a nerve.  Constantly.  Now, that’s not to say I’m in constant pain from this pinched nerve.  But even now, I can feel the stiffness in my arm and I can sense that one good tic will send it over the edge.  I’m always one good tic away from mind-numbing pain from that nerve.  Good times.

If we move a little lower down my spine we reach my shoulder blades where my body, in an act of defiance, has attempted to take matters into its own hands.  And failed miserably, I might add.  There are four vertebrae in my upper-back that are locked together by bone spurs.  Most people know about bone spurs in your ankle, they’re relatively common there.  The only explanation my chiropractor could come up with was that over time, the bone spurs developed as a way to stabilize my spine as I ticced.  Which I guess, if it’s kept me from serious spinal damage is a good thing.  But I’ll tell you what, there is constant restriction of movement and stiffness and most of the times pain from those bone spurs.  (And I have proof these are due to tics because I do have pre-TS x-rays of this part of my spine).

And then, the tailbone.  I don’t know what exactly is wrong, only that every week when I go to the chiropractor I have one short leg that he attempts to remedy by messing with the vertebrae in my lower back.  And it hurts.  I do know for damn certain that the vertebrae aren’t where they are supposed to be, because if they were I certainly would not have been able to pinch my sciatica nerve the other night simply lying in bed.

Last but not least, the coup de grace.  The icing on the cake.  As if my body hadn’t wrecked itself enough.  My entire spine is literally (literally… I always think of this scene in the Big Bang Theory when I use that word…  and now I’m wondering if my constant use of the Big Bang Theory is alluding to my inner geek…) being tugged towards the right.  It’s on a gradual slant.  And I’m not talking about scoliosis, because I have that too, I’m talking about the fact that I tic so much stronger on the right side of my body that those muscles have strengthened incorrectly so much so that my spine is no longer centered.  Which, I can now blame any poor posture on. 

That’s the physical stuff.  The bruises fade away.  The concussions and migraines dissipate over time.  This spine stuff?  I’m going to be a permanent chiropractic patient.  It is the only relief I have ever gotten.  But unless and until my body decides to take a break from the constant ticcing, the chiropractor can only relieve immediate symptoms.  They can’t affect much change on my body.  And I’m pretty sure I’ve outlined before why I would be remiss to wish the tics gone for a short amount of time.

The emotional scar tissue is pretty gnarly too though.  It’s the reason I don’t trust people I don’t know well and the reason that I’m hesitant to do things.  The reason that I dislike telling employers I have Tourette Syndrome and the reason that I’d rather suffer through a class rather than talk to a professor I don’t know about something deeply personal to me.  Scar tissue is a funny thing.  Because every time that wound gets reopened again, the scar tissue is more prominent.  It takes up more room, be it on your body or in your psyche.  I may not be offended by the things that are said to me, but every remark picks at that old scab.  The one that is from years and years ago when I caught a kid in a class imitating what I was doing to the delight of all of his friends.  Yeah, it’s healed over.  I could probably meet him today and not feel the need to scream and yell.  But I do remember his name.  I remember how it felt.  So no matter what I feel now about those types of comments, the fact remains that once upon a time somebody seriously wounded me.  So much so, that event ended up being the catalyst towards me transferring schools that year.  And every time I hear something or see something to the same effect, it still resonates with that experience and years ago.

There’s an activity we use in the schools to talk about this feeling.  And for those of you who aren’t teachers, I’ll outline it for you.  Every student receives a piece of brand new notebook paper.  They’re all the same, and all without flaw or blemish.  The teacher then instructs the students to crunch the paper, stomp it, scribble on it, and basically destroy it.  After a little time and everybody’s papers are thoroughly ruined, the teacher tells their students to now put the paper back how it was.  Of course, this is an impossible task.  Even if all you did was make one crease in that paper, there is no way you can return it to it’s unblemished state.  The teacher then leads the discussion on how bullying and mean things that we say even if we don’t mean them, are like crunching up the paper.  No matter how sorry we are afterwards or how much we try to fix what happened, we couldn’t make it like it never occurred.  We can’t take away what was said or done.  And the more times we crunch the paper or say something mean to a classmate, the harder it becomes to take away what was said and make it look like it did before.  It’s a pretty powerful activity that can resonate strongly with kids; and one that I will use if I ever find myself in a situation needing it.

I had surgery a few years ago, for something completely non-Tourette’s related (but it fits in, so go with me for a minute).  I was born with a wacky sinus condition that was fixed when I was about 2 years old.  Luckily, the doctor I saw was able to remedy it to the point that I went 15 years without considering another surgery (about 50% of people who have what I did need repeated surgeries throughout their life).  When I did eventually consider surgery as a viable option (I couldn’t breathe whatsoever), I found another surgeon, suffered through CAT scans and scheduled surgery.  When they removed the gauze a week later and he showed me the scans from the surgery, he remarked about how much scar tissue had previously been in my sinuses and “look!” how clear they are now.

I was able to take one lungful of air in through my nose after the surgery before my sinuses stopped working again.

After I was off the Vicodin I thought about what he had said and it really made me upset.  I still couldn’t breathe – and still can’t – and in my stubborn opinion, it is actually worse than it was before the second surgery.  Trying to remove the scar tissue didn’t work, just like trying to smooth out the piece of paper doesn’t work.  Because every time you try to fix it, the scar tissue comes back worse.

Emotional scar tissue is the same way.  I have trust issues because in the years before my parents were supportive of my disability (the years when they pretended I was “normal”), I couldn’t trust them with what I was living with.  I couldn’t trust the reaction I would get, so I didn’t open myself up to them.  I kept things to myself because it was safer.  And that’s spilled into other relationships too.  It’s still hard for me sometimes to open up to people and say the words, “I have Tourette’s Syndrome.”  Because that scar tissue is still there.  It's getting easier; it's a lot easier to say "I have Tourette Syndrome," or "I am a person with a disability," than it was 5 years ago or even a year ago.  It takes time.  That years-old wound formed from Tourette’s being taboo in my house, still twinges when I’m in a new situation where I have to tell people.  Those looks I get when I tell people what I have and they don’t understand or believe in the validity of my statement, all reopen that old wound.  The professors who give me a look and then ask simply, “So are you going to swear in my class?” all make it harder to heal that wound.