Wednesday, October 29, 2014

On Control

Betrayal, duplicity, loss, jealousy, insecurity. Those adjectives are just a handful I use to describe the many shades of complexities between my body and me. I do have some affection for it, but it is largely unrequited. I'm pretty sure my body hates me.  It's like everything that's been assembled to make my body functional is just one giant lie.  It's a classic story of betrayal and the most dysfunctional relationship I've ever experienced. My body 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 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, try to "accept the things I cannot change" blah blah blah. But apparently that's not enough.

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". How someone could not see it baffled me. My wedding dress was a size 16, after all. 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. Is the picture below what I see when I look in the mirror (at 123)?

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 as 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 sugar, no fun. 

Let's factor in a few more things.  I'm half 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 and my husband can vouch that I'll make my way through a bag of potato chips in record time. Then I feel disgusting; it's a solid lost/lose situation.

How do I gracefully settle into a number on the scale in the face of the harsh realities and 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 obviously somewhere too deep for me to dig my way to.

Then there are these handy mottos:

"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.  They are laced with catches and caveats. But I will take any magic pills or suggestions that might help me start to feel okay about my body sometime soon. Hating it so violently and for so long can't be a good thing.

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 I deal with it okay-ish. 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
  • 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 says something so ridiculous and/or hilarious and/ot absurd that it snaps me right out of the wallowing and self pity I let myself fall into. 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.

Wednesday, April 3, 2013

A Day in My Life

So, what's my day to day life like?

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 ever so slowly so I don't slosh any hot coffee on myself 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, then kind of fall on the driver side door to open.  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 an annoyingly 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.  I 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. 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 are errands. 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. 

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.

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.  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.  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 handicapped tag, please hang it! 

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.  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's 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 overweight.  Even my current neurologist categorized me as "borderline obese" in his notes from my first visit in October of 2002 (after a 25 lb weight loss).  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). I've been able to formulate a brand of self-deprecation that is just shy of 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 able-bodied.  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 raised a good Catholic girl.  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 (at 22) 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". I call that bonafide bullshit.  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... I will spare you the laundry list of boo-hooing and just say that it's never been easy and MS complicates things to the umpteenth degree.

There are things I like about my body, too.  I like the way my hip curves down into my waist when I'm lying on my side.  I like my smile and my hands. I like the delicate swerve of my collarbone and the sweep of my neck to my shoulder. 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.

Wednesday, June 23, 2010

Less like hitting a brick wall and more like banging your head against it, repeatedly

So, faced with an unclear prognosis and absolutely no idea what to expect what would a good American girl do? Trust her doctor and big pharma, naturally. And I have lined several drug company's pockets for years. First it was Avonex, then Rebif, one dose of Tysabri (when it was called Antegren- before it was pulled off the market and renamed), Betaseron and finally Novantrone. I think I mentioned this before, but none of those drugs, except Novantrone, worked. 3 to 4 relapses a year, no thanks to the weekly/three times a week/every other day/daily intramuscular or subcutaneous injections I was giving myself. A human pincushion for nothin'. Except for maybe horrible fevers, chills, and body aches. And for that: a special "thank you" goes out to interferons.

So it was time to open a can of whoop ass on MS. What was next? Novantrone. A chemotherapy drug with a life time dose limit (to stave off heart damage) and an increased risk of leukemia. Awesome. I should also mention that Novantrone repeatedly opens multiple cans of whoop ass on me - full on toilet hugging, limp as a wet rag whoop ass that takes me at least a week to recover from. But, it is doing the trick. I'll celebrate four years in remission this August: no better, but no worse; just calm waters. There's a catch (as there always is). I only have one dose left.

I knew at the start of 2009 that I was racing against the clock. So I decided to test another route: diet. That's after trying several other "off label" treatments over the years: the Swank Diet, LDN, manuka honey with bee venom, 4-ap - none of which did a thing. So I stripped my diet of all things delicious and processed (gluten, dairy, soy, refined sugar, yeast, caffeine and limited alcohol). I noticed some changes right off the bat and lost 25 pounds. My cholesterol dropped 30 points, too. I have more energy and I feel good. But symptom-wise? Not so much.

So I decided to go even more hardcore with it. I had a food sensitivity test called the ALCAT test done. It boggles the mind (see below)...

...and confirms that I need to stay away from gluten, dairy and sugar. Booooooo.  We'll see where this takes me.

Friday, June 18, 2010

Let's Take It Back to the Start

Taking it back to the start doesn't imply when had my first symptom or even when I was diagnosed. I knew about MS and all of its ugliness way before I experienced my first symptom.

When I was (a chubby, sarcastic, bratty little) 10 year old, my mother went blind in her left eye. It was totally unexplained. It lasted for a few weeks and subsided on its own. She was 35 - 3 years older than I am now. I was scared and didn't really understand what or why it was happening and I think that pretty much sums up how the rest of the family was feeling, too. For the next 10 years there was a list of symptoms - numbness, tingling, trouble walking (sometimes with a cane) that would come and go, locking our family into an involuntarily roller coaster ride. We never knew where that ride would take us. Her neurologist took his sweet time getting to a diagnosis.

Finally, ten years later, she was diagnosed by spinal tap. I was 20. I didn't really understand the disease and quite honestly I resented the whole thing. Not my mother - just the absolute lack of control, not to mention the complete open-endedness of it all. No surgery or drugs can correct it. It's a disease with no cure.

At the time I was playing in a band called Pohgoh. A band that changed my life - gave me confidence, camaraderie, and memories that I will always keep close to my heart (oh and a drummer that, 4 years later I married - 10 years ago this August!). We put out an album and a couple of 7-inches. One of the records has a song on the b-side that expresses my frustration and selfishness about MS and how it was changing my mother right in front of my eyes.

Within a year I would start to experience transient symptoms here and there that were easy to dismiss because they didn't last long. MS was the last thing on my mind. Seriously.

Jump to August of 2000. Three days before my wedding, in fact. I was driving to pick up my dress and all of a sudden there were two of everything - my right eye couldn't keep looking ahead, it kept rolling to the left. We chalked it up to stress, so I pulled over and my mom drove. It lasted up to and all through my wedding and honeymoon - and three months after. Went to see my mother's neurologist. He did an MRI of my brain and an eye test called a Visual Evoked Potential. I was diagnosed me with a "sixth nerve palsy", which basically meant I had a mini stroke in my eye. Why did I have it? What caused it? The only theory was that it was related to blood pressure. At the time, I was packing about 180 lbs on my 5'5" frame and my blood pressure was (understandably) up.  The doctor advised me to lose weight, stop taking birth control and then handed me a prescription for a beta blocker. 

Here's where I screwed up: the double vision subsided and I was feeling good so I took his diagnosis, packed it up in the "worry/unknown" box and locked it away. I should've gotten a second opinion.

I have to stop again for a moment and tell you how perfect Keith was through all of this- he made little patches out of black construction paper to put inside my glasses and sunglasses so we could go about our lives as "normally" as possible. We joked about his wife, the pirate. All of my friends went with it too - if they were concerned, they did a good job of masking it. In our first year of marriage, we had to deal with a lot and he was right by my side at all of my doctor appointments. He was the voice of reason and perspective when a new unexplained symptom would pop up and I was freaking out (cause, let's be blunt: girlfriend is neurotic). He just rolled with it and so many others would have walked away. That boy must really love me.

So from fall of 2000 to the following fall of 2001 I had a few more symptoms come and go - my legs got numb, my hands got numb (to the point where I couldn't hold a guitar pick), if I'd bend my head and look down I'd get this weird, creepy electric shock feeling going down my spine... more mounting evidence that I couldn't dismiss. Then something happened that I absolutely couldn't ignore.

On the morning of September 11, 2001 when the whole country was in a panic, I was working in the HR department of a call center. When the news broke we put the radio on the PA system and went to a training room to watch the day unfold. I remember racing to that room and getting so angry with myself because my left leg was completely uncooperative. I was just dragging dead weight, trying to get there as fast as I could. Something was very, very wrong.

About a month later it was time for a second opinion. I went to see another neurologist - this time, I had MRIs on my brain and my spine. On October 26th I went back for my follow up after the test. But first I had to pick up my films to take to the doctor. So I picked them up, sat in my car for a minute and looked through the giant envelope. I couldn't see anything on the MRIs, I didn't know what to look for. Then I read the radiologist's report: "consistent with Multiple Sclerosis". That warranted a freak out. I called Keith. He left work and joined me at the doctor's office.

We went home and I cried for a little bit. Keith cried too - and I knew he must have been devastated because he. never. cries. Then we decided to get out of the house to get our minds off of it. I just remember thinking all afternoon - will I be always be able to walk this far? up these stairs? will I be in a wheelchair? when?

I really had no idea what I was in for.

Tuesday, June 15, 2010

Before I take it back to the start...

I'm 32 years old. Not old, not young; nicely in between. I know what I like and I'm comfortable in my skin - finally after years of feeling prickly and out of place. And I've managed to do that while carrying a huge weight on my shoulders, which I'm pretty proud of.

Multiple Sclerosis isn't simple to explain. It's oh-so-complicated and insidious. No two people are affected the same way. No one is 100% sure what causes it and no one can tell you what your prognosis will be. And on top of that, no one truly knows why or how the drugs prescribed to treat it actually work - if they work at all. I've tried them all. And only one has worked - if you consider working telling someone,"shhh."

I requested copies of 8 years worth of charts from the neurologist I've seen since one year after my diagnosis. I just finished pouring over them - fascinating and depressing at the same time. How many people have documents of their own physical decline? I went from being totally able-bodied to needing a cane in one year. Then after about 3 years it was on to a wheeled walker. Sometimes a wheelchair. Three years ago I got a scooter. So, that's that. I don't have much to say about it. It just is what it is and I am willing to do what it takes to maintain status quo as a functioning member of society. I outgrew the blush on my cheeks when people stared as I hobbled by. Now, as un-confrontational as I am, it's a win if I manage a dirty look. Because ultimately, it's really none of your business.

I was (and still am, to an extent) of the opinion that blogs are for the self-involved and attention starved. More than anything else I want this to serve as a document for me. Because let's face it: I have messy handwriting.

Where to start? Do I just talk about MS? How does anyone get the swing of this? That's enough for now. G'night.