Wednesday, October 29, 2014

On Control

Betrayal, duplicity, loss, jealousy, insecurity. Sounds like a soap opera, right? But those adjectives are just a handful I use to describe the many shades of complexities between my own damn body and me. I should, as an aware and intelligent woman, be in the throes of the greatest corporeal love affair in the history of my existence between my own skin and me. Not so. It's more like we're on Maury and everything that's been assembled to make me human is just one giant lie. My body has tricked me into thinking that it's on my side yet over and over again it attacks me - destroying my trust in it to do anything remotely beneficial.

So how do I wrangle it back to my side? Work with me instead of against me? Magically re-route messages from my brain to every part of my body away from all of the "road closed" signs it continually encounters? God, I wish I knew...

I remember reading a few years back about how some people who have food addictions and then successfully lose weight via gastric bypass or similar procedures find other ways to realize their compulsions: drinking, drugs, gambling, sex, shopping. It's all up for grabs, until you can get to the root of whatever issue driving you to fill whatever hole food used to fill.

It some ways, I have a very similar struggle. I am looking for control over something I've all but surrendered to. I take my prescribed drugs, go to the gym for strength training, try my hardest to pace my days out, eat right, "accept the things I cannot change" blah blah blah. But apparently that's not enough.

Yes, I was a fat kid. And a fat adult. That is no news flash. When I say this to friends, the general response is, "well, I never saw it". That's either a) being really sweet to me or b) having been that way for so long, it was just who I was. How someone could never see 180 pounds on a 5' 5" frame is no small wonder to me. My wedding dress was a size 16, after all. According to this website, I believe this to be an accurate idea of what I looked like about fourteen years ago. In fact (duh), here's  picture of my husband and I four months before we were married:

So, through various attempts over the years with varying degrees of success, I've lost a total of 55 lbs. Impressive? Sure. But I still feel the same. I feel the heft - my arms look huge to me, my thighs seem to have retained their shape and I swear can feel my tummy wiggle and wobble with every step I take. Weight loss does not solve body image issues. I hate my body  inside and out.  Let's be frank.  Is this what I see when I look in the mirror?  Or again, a real life "after" (at 122):

In short: no. In fact I see quite the opposite. Last year I went on an autoimmune Paleo bender in an effort to "heal my leaky gut" and rid my body of all of the things that were causing it to fight against itself . That protocol is even more strict than the "normal" Paleo protocol. I sank down to 118 and was told by my doctor to stop losing weight. I had no control over it, it just fell right off. Friends and family were telling me I was too thin, their remarks tinged with concern. I didn't take those comments with any gravity. Honestly I reveled in it. The number on the scale was a giant middle finger to my body. You think you can control me?! Look at what I did, all on my own! I loved it. I was hopelessly thin and felt triumphant. It was a though I had finally reached some summit I failed to scale time and time again. Others told me I looked great - lean, fit. Those compliments quickly took precedence over the other comments.

This didn't last. How could it? A girl needs to eat. I proceeded to fall into an easy obsession with numbers. I chose to settle on a range of 120-125. Anything above the latter is now cause for panic. 126 = protein, veg and fruit only. No carbs (even gluten free ones as per my 2009 dietary revision), no alcohol, no fun. I work harder at the gym. But I need to qualify my  "workouts" (and I use that word loosely). It's a physical therapy routine - purely strength training with modest weights and zero cardio. I can't do both or if I do I have to count myself out of additional workouts for the remainder of the week just to recover from my efforts. I should also mention that my attempts at cardio are hapless and very precarious. Here's an image that immediately comes to mind:

Let's factor in a few more things.  My mother's side of the family is Italian.  Growing up, every event - success or failure, was celebrated/acknowledged with food. I still feel the urge to console or congratulate myself at every spectrum of an "event" throughout my day to day happenings: a cocktail here, some chocolate there, you name it.  I have zero willpower.  I am not pigeonholing myself into a Cathy comic. But it sure sounds like I am.

How do I gracefully settle into a number when nothing else gives me satisfaction in the midst of harsh realities of losses I've endured over the years?  I fully accept that this is bordering on eating disorder territory. But I don't starve myself - I eat! A lot! I can't/won't ever become bulimic. The thought of throwing up what I just ate grosses me out. My husband has loved me at every size so it's not about that; I don't love myself at every size. I have confidence. I don't think I'm terribly unattractive. At 37 I've finally waded through all of the guilt of my religious upbringing and fully embraced my sexuality as a woman and a wife. There's another level of acceptance here that is somewhere too deep for me to dig my way to.

"Life's too short."

"Everything in moderation."

Oh yeah, those are great sayings. They should totally apply to me. I just can't do it.  I would be remiss in not chalking it up to some degree of being a woman who's been subjected to photo shopped bodies and unattainable body types for years. But sadly, that's only a tiny slice of the body image pie for me. It's way more complicated than that. And I feel as though I should add that this is not an attempt to garner compliments or praise about my weight loss, or the like. But I will take any magic pills or suggestions that might help me start to feel okay about my body. Hating it so violently and for so long can't be a good thing.

Wednesday, September 17, 2014

There are perks, too

So I've been doing a lot of boo-hooing lately and I think it's time to snap out of it.  Let's put aside the chronic-illness-legs-don't-work-everything-sucks mindset and talk about the perks and the weird, fascinating, interesting phenomena that accompany this diagnosis.

1. Clonus Reflex (not me in the video, by the way)
What's that you ask? Well I can't really fidget anymore. But, if a certain part of the ball of my foot hits the floor, my leg(s) start to involuntarily bounce up and down. It's kind of fascinating. And if I move my feet just so in one direction, it immediately stops.

2. Hyperrefelexia (also not me; the man legs give it away)
Doctors have learned over the years to not sit on their lil' stools right in front of me when it's time to check my reflexes or they risk a kick in the nuts. It's funny to me. Is that bad?

3. Being virtually impervious to pain.
After 13 years of shots, IV infusions, blood draws, vaccines, urodynamic tests (note: not dynamic in any sense of the word), Botox in my butt (yes, really), I've built an impressive tolerance to pain. Eyebrow wax? Tattoos? Pssh. Child's play.

4. Random strangers apologizing to me
What are they sorry for? It's fun to imagine there's a giant conspiracy with a network of people personally responsible for my current state, ala Olivia in Fringe and the Cortexiphan trial she unwillingly took part in as a child. My imagination: kind of awesome. But seriously, stop apologizing to me unless it's really warranted.

5. Am I too drunk to walk straight? You'll never know.
Don't get me wrong; I'm a lightweight. When I'm sober, I already walk in such a way that implies otherwise. BUT, there's no way to stumble when you're seated in a scooter.  And no, asshole on your fourth Amstel Light, I can not "get a DUI on that thing". I can, however, run over your feet... on "accident".

6. Chivalry is not dead
Doors are opened, planes are pre-boarded, amusement park, security and check-in lines are faster because I can skip in front of all you able-bodied suckas. I am whisked up flights of stairs by burly men. Complete strangers carry my trays of food and move objects out of my path without me having to ask.  Not to mention primo seating at concerts and the best parking spaces. Basically, I'm VIP everywhere I go. Yes, you can be jealous if I can be jealous of your functioning legs. That's what fancy people call "quid pro quo".

Only six?!  Yeah, I haven't hit the lottery.  But those are pretty decent consolation prizes.  Hey, I'll take it.

I totally just thought of this.

7. All you suckers walking around wear the soles down on your shoes.  Not me!  Save for the few steps from my door to my car, my shoes virtually look brand new.  Ha!

Thursday, August 28, 2014

When your body betrays you

When your body betrays you, it's amazing how it can still break its own heart.

You know, I've dealt with this disease for 13 years and most of the time it just is what it is. About 6 or 7 years ago I remember falling and then I just stayed on the ground and cried - not for any broken bones or cuts and scrapes.  When my husband frantically asked me what was wrong, I simply said,
"I'm tired of it. I'm tired of all of it".

Without fail about once a year I go through a phase of being really, really fed up.

I don't want to put on a brave face.  I don't want to smile and pretend I'm okay.  I'm not.  This situation is so fucked up.  The day to day drudgery wears me down.  Just maintaining and keeping my head above water is overwhelming.

The never-ending list of upcoming doctor appointments.
Dragging myself to the gym twice a week and knowing that my legs are stronger but nothing improves.
Shoveling in a mouthful of medications and supplements.
The involuntary leg jerks that contort my whole body into an unattractive lurch and keep sleep just out of my reach.
Taking each step up to my front door with careful calculation and realizing we're going to need a ramp soon.
Simple acts like walking (read: dragging my feet) to the bathroom or getting a cup of coffee that require Herculean effort.
The shame that has accompanied all of the little losses over the years, things I used to be able to do but no longer can.  It's a laundry list.
Growing my hair out for 3 years and watching clumps of it come out in my hair brush thanks to the new drug I'm taking (Aubagio).
Saying no to things I want to do because I can't do them (too hot, too many steps, too tired to care).

Even going to a friend's house for dinner requires a choreographed routine of my husband carrying me up the stairs and then lugging my scooter inside where I hope to navigate around without nicking a door frame or bumping a bookcase.  And then I fear spiral and realize that my husband won't be able to carry me around forever.  It feels like it's never over and it can bury me if I'm not careful.

I have to allow myself to feel it all.  Otherwise I risk sinking into a comfortable slump of denial.  I don't remember how I used to move anymore.  I get jealous.  And I get so in "it" that I can't see past my own nose.

Then my husband, who is keen enough to see the road I'm going down, sends me this link. Something so ridiculous and hilarious and absurd that it snaps me right out of the wallowing and self pity I let myself fall into.

There's wisdom in that.  It's called perspective.  And then he gives me the best hug - wraps me up in all of his warmth and strength.  I start to feel like everything might be okay.  Maybe?

I will barrel through it.  I will go to the gym.  I will eat dinner.  I will watch tv.  I will go to bed.

I will wake up and start it all over again tomorrow.  And hope, always hope. It keeps spinning its wheels even when I'm not around to see it.

Sunday, June 23, 2013

On pacing myself

No, no I'm not talking about walking to and fro ala an expectant father in a mid-century hospital waiting room, anxiously awaiting the congratulatory pat on the back and obligatory cigar. 

I'm talking about this definition of pace-
a : rate of movement; especially : an established rate of locomotion
b : rate of progress; specifically : parallel rate of growth or development
c : an example to be emulated; specifically : first place in a competition

If you have a chronic illness (i.e. Multiple Sclerosis, Lupus, Ehlers–Danlos syndrome, Fibromyalgia, etc), there is a limited store of energy you start with every day.  Like a full tank of gas, or as it is explained in the most poignant and well-thought way, the spoon theory. In summary: everyone has a certain number of spoons doled out to them signifying the amount of energy he or she has.  One activity equals one spoon - that spoon is taken  from the handful you've been given and not returned.

My problem is that I usually wind up with a negative spoon count.  Almost twelve years since my diagnosis and 14 years of symptoms and I still haven't learned how to pace myself.

Here's how it goes: I'm out running errands.  I feel great.  I keep going.  The boomerang of tired doesn't slap me in the face until later that evening.  Or the day after that.  And sometimes it takes days to recover.

All activities are interchangeable - running errands, taking a shower, cooking dinner, doing the dishes, getting the scooter on and off the car, getting dressed, walking up and down the hallway.  What I do doesn't matter.  It's the physical action, of whatever, that eats away at my desire to do anything. Because ultimately, anything makes me tired. Even sitting at my desk all day placating clients, sending the same emails and running the same reports I've run for the past seven years is mentally exhausting.

How do I combat that?  Rest.  Oh yeah, that.  Which basically translates to me being holed up in the house while the world is happening outside and all around me.  You want to talk about feeling left out?  And what ultimately happens is that I get stir crazy and bored, only to wind up doing the same things that made me need to rest in the first place.

What else can I try?  Drugs, caffeine, Red Bull.  No.  Feeling tired and jittery simultaneously is such a bad combo.  Don't try it.

I like my independence - even the relevant degree that I have.  My scooter, lift and hand controls have saved me in that regard.  But there's still the chance of a thunderstorm soaking me to the skin as I move at an infinitesimally slow speed getting the cover on the scooter and then hobbling my way to the driver's seat.  And that's just one of the daily details that zaps any bright-eyed bushy tailed-ness right out of me  Let's not even include emotional stress, highs or lows.  I lost a friend last year and the memorial(s) I attended left me drained. Even the things that make me deliriously happy have a similar result.  Ex: Seeing my favorite band of all time for the first time in thirteen years left me in bed recovering the next day.  

What's a girl to do... 

Solution #1: this beauty.  I can honestly say I never thought I'd be so stoked about a minivan - a $46,000 minivan, at that.  Mine's silver and after almost a year of working with Vocational Rehabilitation, it is so close I can almost reach out and touch it.  I'm excited about pressing one button to open the side door and watch the ramp ease down onto the pavement so I can roll right in and step into the driver's seat.  Man oh man, the amount of energy that will save me.  Not to mention the pressure off of my lower back and hips which have been in chronic pain since my miserable failure of a month-long dog experiment in January of this year.  (In short: I wanted a dog.  I pushed for it.  I got him.  I couldn't handle it.  He's with a great family now.  I miss him.  My body is worse for the wear.  In other words, a terrible decision I will never live down.)

Solution #2:  meting out my time like making sure I have enough ketchup packets for a serving of french fries.  It's a silly analogy, but it works. How many ketchup packets/spoons, et al. do I get for daily tasks?  This doesn't include daily grooming or meal prep without which I would be a greasy-haired, malnourished runt.  I do need to take pride in my appearance and give my body fuel.  And working is also out of the equation. My mister can help with dinner prep and grocery shopping.  I wash/dry/fold laundry and he puts it away, which requires the biggest effort.  House and lawn are cleaned and maintained by outside help that we pay (very reasonably) for.  And it's worth every penny.

What's left, you ask? Band practice, physical therapy/exercise, social events, family time, church.  It's going to have to go down like this: one major event a day.  If two are coinciding on the same day, one has got to give.  I hate it, I feel like I'm sacrificing parts of my life.  But if I don't do this, I will pay for it.  

As far as the emotional stuff, I just have to take it as it comes.  I have no control over that.  I know I can control how I choose to react.  But, I don't want to numb myself with medications to the point where I feel nothing.  This is not a scenario where "better living through chemistry" applies.

Welcome to to my world.  It's kind of unfair. That's obvious.  This is not a result or consequence of any choices or decisions I've made.  This hammer came down fast and hard and continues to come at me every. single. day.

I can unabashedly admit that I get a giant pang of jealousy when I hear tired mothers complaining about how exhausted their abled-bodies are from caring for their beautiful miracle children.  Or how exhausted someone is after running a marathon.  Pssh, I run marathons every day just by completing the simplest tasks.  And I have settled with the constant current of heartache that I will never have or be able to care for a child.

Everyone as their relative sadness, their cross to bear.  I am no means claiming the prize for self pity. I would refuse it if handed to me.  I do let myself fall into pockets of despair more often that I choose to admit.  Is it justified?  I think so.  Maybe just not as often as it has been happening of late.

It is what it is.   I'm trying with every molecule in my being to make it work.


Is it working?

Wednesday, April 3, 2013

A Day in My Life

So, what's my day to day life like? Not nearly as cool as this.

I wake up, stretch my legs (kind of a pointless venture, as they are in constant protest against bending) and hobble my way down the hallway to the bathroom.  Do my business and then head into the kitchen to make some coffee.  Imagine how much longer it takes to put a pot of coffee on when you only have one hand free because the other hand is holding on to the counter top for support.  I can get a good 5 to 10 minutes of standing in before my knees start to buckle and luckily the coffee is done by then.  So I fix a mug (with a lid) and craftily maneuver my way to our home office, my mug of coffee sitting on my walker tray while I walk down the hallway in an ungainly lurch ever so slowly so I don't slosh any hot coffee on me or our wood floors.

Then, I gulp down the myriad of drugs needed to counteract the symptoms associated with my diagnosis.  Drugs for anxiety, muscle spasticity, leg strength, walking speed and bladder issues.  And a bunch of vitamins, too.  What the heck, let's take 'em all.

I am lucky to work from home.  When I had a daily commute, the energy needed to get dressed and get out the door required me to rely on a drug called Provigil (basically speed) to get me through to the end of the week.  I got off that train when I got this job, which allows me to contribute to the household in a professional capacity without running my body into the ground on a daily basis.

The next 8 hours involves sitting at my desk, interrupted by many, many trips to pee.  Because of the interrupted signal from my brain to my bladder, I have no warning.  When I have to pee IHAVETOPEEOHMYGODI'MGOINGTOPEEMYPANTS.

At some point, I get dressed.  Getting dressed means sitting down and grabbing each leg to put them in a pair of pants and standing up just long enough to wrangle zippers and buttons before I smack my booty back down on a chair. Don't get me started on the frustrations known as wearing tights, leggings and/or spanx. Those are events entirely unto themselves.  Everything is done sitting down: getting dressed, hair and make up - all the necessary prep and primping that being a girl involves.  I have learned over the years to avoid clasps, buttons and earrings with posts at all costs because the loss of dexterity in my hands make them nearly impossible to wear.

Next, I make my way out the door, strategically planning for all of the things I need to grab before I go outside and then (of course) making a final stop to pee before I head out.  Leaving my walker by the front door, I clumsily execute the path to my car (only after my husband thoughtfully turns the car around so the driver's side is closest to the door).  I take a few ginger, precarious steps to head  to my carport, holding on to the railing, then the garbage can and then kind of falling on my car to open the door, like I'm leaning in to do a push up.  I get into the car using the grab handle and pick up my legs to swing them inside. Using hand controls to accelerate, brake and turn the wheel - I get to my destination: physical therapy.  I  waddle to the back of the car and wait a mind-numbingly long time for my scooter lift to lower to the ground so I can ride inside.

Leg press machine, practice walking with one crutch, balance and core exercises - and one hour later, I'm exhausted.  I head down the elevator back to my car.  Oh awesome, it's raining.  Thank goodness for covered parking, otherwise I would be drenched and feeling totally defeated.  I get the scooter on the lift and wrangle a cover on it so it isn't completely ruined.

Once I'm home, there's dinner to worry about. Since I can't traipse all over the kitchen all night long, I carefully assemble all of my ingredients - down to the measuring spoons - and get started.  I sit on a stool to cook at the stove top and use my one handed technique to get things in and out of the oven while I hold on to the counter top for dear life.  I'm always afraid I'm going to lose my grip and fall into the oven.  I have a picture in my head of falling on the open door and letting out a ripping scream of pain. Ridiculous, I know.  But it could happen...?

Dinner's ready and Keith comes to the rescue to carry our plates to the living room.  And my drink, too.  After a little t.v., it's time for a shower.  Can't remember the last time I showered standing up.  My balance and leg strength make showering a dangerous pursuit; that's what my bath seat is for.  Every time I get out, my eyes are completely bloodshot from the nonstop stream of water hitting my face. If the water was too hot, I have to sit and cool off before I go anywhere - heat + MS = a bad scene.  My legs turn to Jell-o.

On the weekend, there's errands and church to think of.  Target and Whole Foods = lots of stares and kids asking their Momma what happened to me.  Handicapped stalls are usually occupied by said moms with said rug rats, or just jerks who like the extra space.  At church, I have to make sure I sit in the "handicapped" section so they bring me communion - otherwise I have to head all the way around to the center aisle, jump the line and make a big ol' scene.  Oh, and at the grocery store I can't buy too many groceries unless I park my scooter at customer service and ask them to ride the Andre the Giant sized scooter to me that has no turning radius and makes that awful beep when you back up.  Fingers crossed that it's charged and it's the one good scooter out of the 5 or 6 they have. Once I get my groceries home, how do I get them inside?  Very carefully - sometimes in 3 or 4 trips.   oof.

Bars, restaurants, clubs: are there steps? Are they accessible?  What about the space between tables - too tight for me to fit through?  And if we go to a party at someone's house - do I use the wheelchair, scooter or walker?  Are there steps to get inside?  Is there a bathroom on the first floor?  How crowded will it be?  Will we be inside or outside?  No mingling for me - I just have to find a seat and park it - hoping people will come and talk to me.

Yes, I am complaining.  But why?  When I was able-bodied I took the simplest things for granted.  It's a humbling thing to constantly ask people for help.  And they do, without blinking.  I have the best kind of friends.  Brandi to go grocery shopping with me.  Vanessa to drive 45 minutes from her house to mine, bringing me dinner when she knows I'm too tired to cook.  Kim to deliver hooch when I need a drink.  And the countless other friends who don't even think twice and jumble their way through my unclear directions for getting the scooter on the car, bring dinner, do the dishes, set up my gear before a show, carry my drinks etc etc etc. And Keith, my rad husband.  It doesn't go without saying, so I'm saying it.  He is the best, brightest spot in every day and helps me with pretty much everything.

It is what it is.  And what it actually is: a giant pain in the ass. Now you know why I look so tired all the time...?

Thursday, July 7, 2011

On being a (disabled) woman with MS

I've been thinking about this a good bit lately, and I hope that I can express such a delicate subject matter with grace and humor.  If you know me and you're reading this, I am now making myself that much more vulnerable to you.  But if I can't be honest with you, how can I be honest with myself?

And let me also say that the purpose of this blog is not to cast a giant net in hopes of catching a compliment or two.  I'm just trying to explain what's going on in my head.  It's a mess up there.

It's one thing to have MS.  Being a woman is another thing entirely.  But a woman with MS?  Woah, my life just became 10,000 times more complicated.

Before we go any further, let's cover the basics:
1. To my able-bodied ladies: the handicapped stall is not meant to be your personal beauty salon. If there are regular stalls open, please avail yourself to one of them and then proceed applying copious amounts of  lip gloss/get that one hair that won't cooperate in place/double check how your butt looks in those jeans in the "common area" of the bathroom.  If I have to go to the bathroom and you're playing Miss Fussy Pants in front of the mirror in the one stall I can actually get into, that's not cool.  I need that stall so I can wheel right in.  And those grab bars aren't there for ladies who are too drunk to pull themselves off of the toilet but rather so us 'cappers can get our wobbly asses up without falling on a dirty bathroom floor.  I understand if you have small children to corral or there are no other stalls available.  If that's the case and you need use the bigger stall: make it quick. Please, and thank you.

2. Handicapped parking spots are not in place for you to run inside real quick for <insert random Saturday errand running here>.  Don't do it.  It's not cool.  Your legs work, make it happen.

3. If you have a tag please hang it!  Or I will consider you to be just as inconsiderate as everyone else and  leave a lovely business card that I had printed up special for the occasions of douchery when someone parks with out a tag.

4. Don't stare.  You only make yourself look like an idiot. At least to me.

5. Dressing rooms: see #1.  Insert changes where needed.

Sorry, just had to get that out.  I'm ready to move on now...

Let's face it, whether or not it's a satisfying revelation: we are all judged by our outward appearance.  When you see me rolling towards you in my Pride Go-Go Elite 3 wheel scooter, that's the first thing you see.  It doesn't matter that I've maintained a  weight loss for over four years, that I just got my hair cut or am wearing a super cute outfit.  Don't shake your head.  You know it's true.  And unfortunately I, like many women, base a portion of my self worth on other peoples' perceptions of me and how I look.  We all do it to varying degrees because it's impossible not to.  As I've gotten older/become disabled, I've started to care a little less about what people think of me.  It's still a compliment when someone tries to flirt with me (note to my husband: no one flirts like you do), as rare an occurrence that may be but really, who would want to?  I've got a truckload of baggage hidden just around the corner- literal and figurative.

Scooter aside, I want to be desired and desire someone- to receive love and give it in return.  It's innate, isn't it?  We all have our hang ups. I have spent most of my life as a self-dubbed chubster.  Even my current neurologist categorized me as "borderline obese" in his notes from my first visit in October of 2002.  In my brief stint as a Girl Scout in the 4th grade, Sears had to special order my uniform in the "Pretty Plus" size.  High school was no fun either.  Someone made fliers with my yearbook photo on it that read, "Have you seen me? If so, please call 1-800-FAT-COW".   No lie.  It's an understatement to say I have self-image issues.

As the years have gone by, I've actually shrunk quite a bit (-25 lbs in 2000, - 25 lost in 2009 and -10 lost in 2012) but in a cruel twist, my disabilities have gotten worse.  So it's basically a wash: trade one insecurity for the other.  I'm pretty close to a waddle when I walk and that's only with a walker in front of me.  Not sexy.  Just, no.  I want to buy cute clothes and show off my smaller bod.  But it doesn't really matter, in my opinion. I'm usually seated either in a wheelchair, a scooter, or a chair and I don't think anyone is looking at my clothes.  And that's my sad little perception.

Am I thankful my husband knew me before I became this version of myself?  Absolutely.  It makes me a little less self-aware when I'm trying to get down the hallway.  We laugh about it a lot.  To clarify - he's not laughing at me (most of the time at least; but some of the time, it's totally called for) and I've been able to formulate a brand of self-deprecation that is just shy of being pathetic.  But it is nice to be reminded of how it felt to be "normal", whatever that is. Even though this is pretty much my normal now, no matter how hard I try, I will always see myself differently.  I was even on a kick for awhile of refusing to be in my scooter or wheelchair while someone was taking a picture of me.  I didn't want a permanent document of something I've lost.  Now? It's slightly better, but pride still gets the better of me from time to time.

Laughter is one of the most precious commodities in my marriage.  So much so that I can't place a value on it.  But it's so much more than that. There's an ever-present intimacy that cuts through any potentially embarrassing moments.  We laugh (I know I already said that, but we laugh everywhere - in the bedroom, too) at my physicality, or lack thereof.  That takes a level of comfort that, quite frankly, I never thought I'd possess.

In any relationship, especially a long term one, there is this sort of dance filled with nuance that you have to choreograph and nimbly execute or you wind up being at risk of losing what makes you such a great couple in the first place.  We aced that test and continue to.  Suffice it to say that living with MS has muddled it all up by putting both psychological and physical road blocks that inhibit me from expressing myself the way I want to. Still, we make it work.  Really well.  And that's all I'm gonna say about that.

I was a Catholic girl - still am.  I wasn't necessarily an angel when it came to the inevitable indiscretions of dating cute boys but there was one line that I refused to cross.  So my wedding night was the epitome of a rite of passage.  I felt different after, entitled.  Fast forward to a year and a half later and my ability to enjoy one of the few things it felt okay to enjoy started to slip from my hands - try as I might to hold on it.  I was angry.  I was terrified, in fact.  This new part of me that I'd been celebrating was changing right before my eyes.  I had just gotten comfortable with the fact that it was mine and I was owning it.  I didn't didn't want to think about turning my ideas of love and sex on their respective heads.  And definitely not in the lame, National MS Society pamphlet way of defeatist rationalization, something in the vein of: "sometimes, just laying with someone can be satisfaction enough." Bulllllll shit.  Anyone who hears that and tries to accept it is doing a really weak, half-ass job of consoling themselves.  Yes, cuddling is nice.  But there's a lot of things that are way more fun than a cuddle.  I mean, come on.

There are parts of my body I hate.  I think it's fair to say that everyone feels that way.  But, add in a blaring insecurity about how I look when I walk/the way I move/all of the bummer side issues that are a part of living with MS (pee issues, muscle spasticity), injection site bruises, incision scars... I will spare you the laundry list of boo-hooing and just say that it's never been easy and the past 12 years have been that much harder.

There are things I like about my body too.  I like the way my hip curves into my waist when I'm lying on my side.  I like the delicate swerve of my collarbone and the sweep of my neck to my shoulder. I like how my hip bones jut out when I'm laying on my back (Weird one, I know.  Air fist pump for weight loss in 3...2...1: GO!).  There's a landscape to my body that I can appreciate now more than I ever could.  MS has nothing to do with that.  But that's ok. I'm still a woman and want to be reminded of it. And I am. Thank God for that.

Sunday, June 19, 2011


Last year on Friday, June 18th I had my first venogram to treat CCSVI.  Exactly one year to the day (Friday, June 17th, 2011) I had my fifth and possibly final venogram to treat CCSVI.

It was originally scheduled for Friday, May 27th but due to an equipment malfunction at the hospital, I was rescheduled for 3 weeks later at another campus-the same campus I was first treated.  After the fact, I realized the significance of the date.  I didn't want to put too much weight on that coincidence, in case that's all it was.  We know where that road leads: disappointment, depression, sad Susie.  But, my little optimistic heart just couldn't ignore it.  Which only led me to where I am today... sad Susie.  I don't like this version of myself.  But I have to let these feelings to peek through - even if for only one day.

There is some sick part of me that actually enjoys checking into a hospital.  It's not like I have some kind of freaky masochist lurking beneath my chipper veneer.  It's the comfort of knowing there's a team of people there just for me - even if only for a few hours.  Doting on me, checking my vitals, offering me empathy and words of encouragement.  I hold on to it because it helps me remember that I'm not trying to figure all of this out by myself.  And as a whole, this past year has been a flashing neon sign reminder of that.  My doctors, my physical therapist, the nurses -everyone- have been awesome.  Let's not forget my husband, friends and family - they're that constant kind of awesome that's easy to take for granted.  But having a doctor say that he will never stop trying, that's a rare kind of commitment and is appreciated more than I could ever adequately commit to words.

On to the details:  IV in, foley catheter in (better safe than sorry, but lawd, it's uncomfortable).  The anesthesiologist stopped in for a visit and let me know that because of where Dr. M was going with the catheter wire (across the veins in the back of my head) they might want to put me completely under so I wouldn't move my head around.  Which would mean a breathing tube and everything.  shit. Then Dr. M came in to visit and fill out an H&P - and now I know that stands for a history and physical.  Just a bunch of questions... and by about 10 am I was back in the radiology suite.  

I remember the anesthesiologist telling me he was going to start the Propofol and then two seconds later (it seemed) I was waking up in recovery.  Thankfully, they didn't have to put me completely under.  No neck brace either, which meant no stent in my left jugular - which was the goal.  The whole point of my visit, in fact.  Then I heard the nurse talking about continuing the Lovenox so I had a spark of a thought that maybe they just hadn't put the brace on yet?  Not sure of what had happened, I dozed off to sleep and waited for some news from Keith who had no doubt already gotten a full report from Dr. M.

Here's what he found:
This is my left internal jugular - see where it's all fat and then just kinds of winds its way into nothing?  And then it's picked up by a collateral vein (that my body created to help accommodate the lack of flow, which I still find amazing).  He tried every which way to get into the occluded portion of the vein but it just wouldn't budge.  As stubborn as me, I guess.

Now, here's where you can see a huge difference (17.54 mm wide).  Here's the right side, which was mild-moderately stenosed at the bottom:

And here it is after he ballooned it:

The good news?  My azygous vein, that was stented in February, is looking good.  There's a little bit of hyperplasia, which is just a build-up of cells in the vein wall - a way of my vein fighting back against the stent, I guess.  But he was able to balloon that and treat a small amount of restenosis he found:

You can see the stent on the left side, it looks like a shadow.  Here's a lil' movie, too, that shows the blood flowing nicely in that vein:

No, it's not all bad.  But the one thing I was hoping to fix is still as bad as it was before.  It's nobody's fault.  I have diseased veins.  I just feel like I'm settling. I want to ask "why?":  Why do others get so better and I've only had marginal improvements?  Why can't we get that open?  Why does 2 outta 3 have to be enough for me?  It's not.  I want more.  

But on the other hand, I wasn't sure how I felt about a stent in my neck.  The recovery would've been longer, and more uncomfortable.  Though I am still recovering.  I have a nagging headache and my neck is sore, all around.  He made sure to double up on the incision with dermabond AND steri-strips so hopefully I won't have the bleeding problems I did last time.  And I'll only be on Lovenox for another week or so then it's down to Plavix or Aspirin.  Maybe Pradaxa istead.  

As the nurse was escorting me to the discharge elevator, I had to stop and use the bathroom.  I heard a conversation outside - and when I opened the door, the nurse said, "There's someone here to see you."  Dr. M had come to talk to me and I almost missed him.  He went through all of the details and though I was still pretty groggy, I remember that he seemed pretty disappointed.   He had to get to another case, so we said goodbye and I was just able to hold back a cry as I spun around and headed in the opposite direction.  I took a deep breath and told myself to keep it together.  I refused to allow that disappointment to sink in like it had before.

So, what now?

I was talking to my mom about it and she said, "Now you can put this all behind you and move on."  Um, no.  It's not like I went through a phase.  I didn't dye my hair pink or date a biker.  I can't just pack up a box, label it "CCSVI", put in the closet and open it up every once in awhile to reminisce.  I have a permanent piece of mesh in my body keeping one of my veins open.  And 3 starclose devices just under my skin at the top of each thigh.  Not to mention a total 5 or 6 incisions.  But let's forget about the physical reminders and talk about how much I've changed as a person the last 18 months.  I've empowered myself with knowledge and the confidence from learning that I can change the way my life plays out because I have a degree of control over my health and how I choose to treat my disease.  

And this probably won't be the last venogram - the stent will have to be checked on every once in awhile. I'll also need to keep close tabs on my symptoms in the event that I may need to be re-plumbed.  There is also talk of venous bypass - major surgery.  When Dr. M was rooting around on Friday he found a vertebral collateral vein that he's sure would be a good vein to use for bypass.  We're going to see how I'm feeling and then possibly set up a consult with a vascular surgeon at St. Joe's to talk about possibilities.

For now, I'm stable.  I've been off of any/all MS disease modifying drugs since July of last year and I'm just a week shy of a one year drug-free remission.  Plus the four years of remission prior to that thanks to Novantrone.  It would seem to me that just diet and angioplasty have been doing the trick. So if I ask myself again: what now?  Stick with the diet, get back to physical therapy as soon as I have the green light, live my life - limitations and all.  I've got to keep moving forward and I will allow myself a glimmer of hope, even if it breaks my heart every once in awhile.  My parents were over last night and my mom told me that people are drawn to me because of this light I have inside - it's got to be hope.  I can't explain it otherwise.