Thank you, Top!

I like to think of myself as a strong person.  I’m the one who stands straight when dealing with adversity; there to support the ones who “really need the help”.  My MS proves that’s not true.  It reminds me how much I lean on others and how much others carry me, support me and give me the strength to keep moving forward.  There are three people in my life who have carried me through some of my darkest battles with MS: my mother, my wife and my first sergeant.

When I was first coming to terms with my diagnosis, Mom was always there to support me and help me down this new path.  I retired from the Army at the end of 2000 and started a new life: 28 years old and learning how to live with multiple sclerosis.  Some of my worst days were still ahead of me.  At several points during that time, my only salvation was being able to lean on mom.

In 2004, I met Brie.  On the first date, I spilled every detail of myself.  She took it all in stride and, for some reason, still kept me!  Brie has held me through nights of tremors and long days in ERs and hospitals.  She knows when my hands can’t hold on to something and when I can’t let them go, when I am having a hard time walking and when my words start to slur.  Without even asking, she knows just how to help.  She’s there every time.

Before I was as ‘well versed in MS’ as I am now, everything was new.  I was still a Captain in Army Aviation, in command of a maintenance Cav Troop over in Korea.  I was diagnosed in September of ’99 but I stayed in command until June of ’00.  First Sergeant Michael "Top" Stewart and I were a command team for about a year and a half.  I remember thinking about how great he was for the troop.  After first becoming sick, I wanted to stay in command.  “I can do most of my job still.”  Besides, if I need to step back a bit, Top Stewart is always picking up my slack.

And so life went on for a bit.  Some days were worse than others; my right arm and my vision were the parts most likely to fail on a regular basis.  Thank goodness for Top!  Like First Sergeants before and since, Top Stewart would pick up the commander’s slack.  A commander’s time is always busy, so 1SG Stewart never questioned when I wasn’t around.  I was able to ‘take care of other stuff’ without having to worry about the troop. 

Right before 1SG Stewart was scheduled to rotate back to the states, I thanked him for everything.  I let him in on my little secret.  I told him how many times when I wasn’t around or was just sitting in my office, I wasn’t busy with other work.  I was just having trouble seeing or moving.  I figured that since he did so much to help carry me for those months I should at least let him in on the truth.

 

His only response…. “Yes, sir.  I knew."

 

He never let on that he was carrying me.  Fair enough, I guess since I never let on that I was letting him carry me.  Through the years we’ve talked a bit; even as a SGM he was still "Top Stewart" to me…Now, we’re both retired.  It’s a younger/healthier game!

It’s been a while since I last spoke with Mike.  Too long, in fact.  Time to reach out to an old Army buddy and let him know just how much his strength still carries me today!

Laugh Until It Hurts

Laugh until it hurts…

If it hurts this much now, I have a lot of laughing to make up for.  I’d better get started!

I always tell me friends “Try not to take what I say too seriously”.  When I want to speak seriously with them, they’ll know it.  Besides that, it’s as if about 90% of what comes out of my mouth is sarcasm.  Nothing bad, nothing hurtful.  Just fun.

I’d like to blame that on my MS (I’d like to blame all of my quirks on my MS) but that’s not true; at least it’s not entirely true.  Call it what you want to (sarcastic, witty, smartass) I have always relied on humor.  I just do it a whole lot more now than I did before.  For me, it softens the mood.  If there is no reason to be all serious and tense, I say “why not relax a bit and enjoy life?”  It definitely helps take the edge off…

When I was first diagnosed with MS in 1999 there seemed to be little reason to relax and enjoy life.  The numbness, pain, vision loss mixed with question.

·         What is going on?

·         What’s going to happen next?

 My diagnosis was faster than many others I now know.  Those first few weeks were dark.  Before I even really knew what was going on, I knew that my career was over.  The Army was the only thing I knew since I was 17 years old.  After all of the initial testing I was sent to Tripler Army Medical Center in Hawaii.  More tests and more waiting.  By the end of the week, I had all but given up.

I was in the office with the chief neurologist as she explained what was going on and what was going to happen to me.  The conversation went something like this:

“You have Multiple Sclerosis”

What does that mean?

                                <feel free here to insert your own first explanation of MS that you got>

What will happen to me?

                                “We have some treatment options that we can look at trying”

Can I still fly?

                                “No”

Will I ever be able to see again?

                                “We don’t know for sure.  You might in time.”

Will I ever get feeling back in my arm again?

                                “We don’t know for sure.  You might in time.”

For me, this was a make or break point in my new life with MS.  I reached out for the only way I knew to take the edge off of my stress.

Will I ever be able to play the piano again?

                                “We don’t know for sure.  You might in time.”

Good, ‘cause I never could before!

She was to taken back by that, for the next half hour I don’t think that Colonel blinked even once.

I sure felt better!

Laugh until it hurts…

Never Stop, Never Quit

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

 

Back in my Army days I was an attack helicopter pilot in the Air Cav.  By default, I love to tell stories…bear with me.

 

Back in the spring of 1993, I was a West Point cadet preparing to graduate in a few months.  I remember (though the circumstances have grown fuzzy) a conversation that our Commandant was having with a tour group on campus.  At the time, BG Robert Foley was one of three remaining soldiers on active duty who had been awarded the Medal of Honor.  He was describing the dedication that is groomed into young cadets, and how that dedication consistently shines in generation after generation of Army leaders coming out of West Point.  “They will never stop.  They will never quit.”  That was a repetitive theme that he shared through examples of moral & physical challenges that grads had faced.  It was quite stirring.

 

Stirring to the point that his theme became kind of a calling card for my dedication years later.  I was overseas in commend (D/1-6 Cavalry) when I was first diagnosed with Multiple Sclerosis in 1999.  Although my Army career ended in a flash, my physical recovery has taken much longer, I continue to come to terms with being told "you have MS". 

 

I have been able to fight back, though.  Through the amazing medical treatment that I receive from my doctors at the VA Hospital, my health is ‘stable’.  Through the constant love and guidance from my friends and family, I have been able to maintain my daily life.  All the time, the support from advocacy groups like the National MS Society (NMSS) have kept me prepared (for today & whatever may happen next)!

 

A few years after first getting sick, I was healthy enough to ride my first MS150 (now bikeMS) for the National MS Society (2003 – Pittsburgh Allegheny Chapter).  It enabled me to progress my physical recovery and to give back to support those who had helped me since diagnosis.  I met my wonderful wife and she joined me the next year.  Ever since, we have been participating in NMSS bike rides everywhere we have lived.

 

The theme of our battle every year is simple:

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

 

Brie and I are preparing for our third year riding with the Oregon Chapter of the NMSS; I cannot believe this will be my eighth year!  The two-day event is so much more than just a bicycle ride.  For Brie and me, Christmas comes during the bikeMS weekend!

 

Because of the ride, I have to train year round.  That helps me focus my MS therapy.  When I am stricken more with my disease, I look to our mantra.  Never Stop…Never Quit.  When I lost my vision for a while in one eye, I put on an eye patch, went to the VA for treatment and kept on training.  Never Stop…Never Quit.  Early last year, my arm lost more strength and I could no longer hold on to the bike handle bars.  So there I was, a 37-year old man learning how to ride a bicycle with my new recumbent!  Never Stop…Never Quit.

             

The ride gives me a reason to reach out to friends of long ago.  I talk with COL(R) John Brier, who graduated with the West Point Class of June, 1943 (50 years before I graduated).  Every year, he sends me a very shaky handwritten note with a clear message to be strong! 

 

The special bond felt riding with supporters, friends and our MS family is amazing.  Our team, Team Amulet, spends all year planning, preparing, fundraising and training.  When the ride comes, we celebrate with other teams and ouir supporters.  I share my MS story, but more valuable are the MS stories that I hear from all of my other friends with MS.  We talk about the challenges we face, treatments to help, and ways to cope.  Most important, we talk about all of the efforts we have to get closer to the hour when no one will have to hear the words, "You have MS."

 

Then there is the ride!  10, 30 , 75 or 150 miles.  Anything that we can do is what the goal is.  I always want to do it all, but some years my body just will not let me. 

 

That’s OK, because there is always next year.  Never Stop…Never Quit!

Living with Injections

AVONEX® (Interferon beta-1a) is a 166 amino acid glycoprotein with a predicted molecular weight of approximately 22,500 daltons. 

 

Whatever….

 

Yesterday (14 April 2010) marked my 541^st Avonex injection, dating back to 2 December 1999.  It was a quiet celebration at my bedside with very little fanfare.  Afterward, I spent a little bit of time thinking about my intimate relationship with that 23 gauge, 1.25 inch needle….

 

Not Exactly Sure

I remember first reading the Avonex medication guide way back.  My favorite FAQ was “Q: How does Avonex work? A: No one is exactly sure how Avonex works but it has statistically shown to……”.

 

No one is exactly sure? 

Great

 

Injection Story

Everyone who takes a regular injection has their favorite Injection Story.  Here’s mine:

When I was first diagnosed, I was an Aviation Captain commanding an Air Cav Troop in Korea.  The first few weeks were a whirlwind of tests and ‘trying to figure out my fate.’  I was allowed to remain in-country and be treated there for the time.  So, the US Army ordered my medicine (Avonex).  When it arrived at the Yongsan Army Garrison hospital in Seoul, I took a 3-hour drive from base camp.  There, the medical team gave me a 6-month supply of Avonex and a videotape on how to inject myself.  When I got back to my camp I watched the tape, mixed my medication, and prepared the injection site.  Hooah!  I then prepared to execute a clear & crisp “stabbing motion” with the needle into my thigh.  I sat there holding the needle in my hand for the next 3 or 4 hours.  “Do I really want to stick that thing into my leg?” was the only thought I could muster for hours…

 

Method

I eventually did that first injection.  It hurt – I would love to meet whoever said that a quick stabbing motion is an ideal way to inject yourself.  We would definitely have words.  I’m a lot better at the injections now.  Last night, it was easy-squeezey!  Here’s my trick:

First, the preparation.  No mixing the pellet and water anymore – that’s good.  I gotta let it warm up a bit, so  I take my medicine out of the fridge and let it sit for a while.  Else, I will warm it up in my hands.  If I don’t do that I have cold medicine going into my muscle.  Brrrr!

 

Next, take Advil.  At least 10 minutes before, but I try for a ½ hour.  That will help my body.

 

Now comes the shot.  The guide says you can do it into the top of the legs or the back of the arms.  I have only done the leg muscles.  The other is hard for self-injection.  I normally sit on the end of the bed when I inject.  I get my shot put together, swab my leg and start.  First, I tense my leg muscle up as much as I can and hold it.  Only for a few seconds but enough for my leg to feel the strain.  Then I relax…relax my leg as much as I can and put the tip of the needle against my skin.  Slowly, I press the needle into my leg: straight and gentle.  Sometimes it fights breaking the surface.  Sometimes it hurts a bit while it fights breaking that skin.  I just keep a slow, steady pressure.  Last night was easy and straight in all the way in.  When I inject all the medicine, I unpack the bandage, remove the needle and cover it.  Done!

 

Final step: go to bed!  My body hasn’t fought issues that much for a while but I still just go to bed. 

Done.….  All good

 

Day of Week

That’s tricky.  I try to figure out the best day; when I am most likely home relaxing.  In my Army days, the best chance of that was Saturday night.  Now that I am living the laid back, fat-and-happy retired life (right!) I have switched to Wednesday night.  It’s my routine now.  My cell phone sends me a reminder at 7:30PM each evening.  I also have my beautiful wife to remind me.  There is no way that I can forget!...except when I forget!  Those weeks I have to stumble through the day after a Thursday AM injection.

 

Not everything is MS

My other favorite line is “Flu-like symptoms are manageable. For many people, these symptoms will likely go away over time. So as you stay on AVONEX, these symptoms may lessen, leaving you feeling better”.

 

That wasn’t true for me.  My ‘flu-like symptoms’ occurred every few weeks.  They were the worst nights of my life (drenched with fever, terrible shaking chills) that rolled into painful, bruised days.  I dreaded the next shot but chalked it up to ‘flu-like symptoms’ because of my MS medication. 

 

Stupid MS.

 

In June of 2007, Brie and I moved to Portland to start brand new jobs.  20 June was that infamous injection.  25 June, I started my new job.  28 June, I was in the VA emergency room.  The ‘flu-like symptoms’ and pain in my leg since the 20^th was too much to bear.  The next day they checked me in.  Was it my medication?  Did I have a piece of needle in my leg?  They weren’t sure.  Four days later, the surgeons opened up my leg and drained a massive infection.  After, my doctor’s words to me were that I was ‘a day or two from leaving the hospital without my leg…if I left at all’.

 

So what was causing my ‘flu-like symptoms’?  A splinter.  A splinter in my leg since I was a child.  My injection used to irritate the splinter deep in my leg.  My ‘flu-like symptoms’ were me fighting an infection caused by a childhood splinter.  After my 20 June injection, I lost the fight.

 

Regardless of this being just a splinter, Stupid MS.

So here I am.  541 Injections down.  Is it working?  I’m not exactly sure but statistically speaking I am better off…