Sunday, February 17, 2013


Lent.  Stop.  Look.  Listen. (from the sermon at church today)

In the midst of change, it's good to do this.  And what better time than during Lent.

Glimpses from the past week...

"Beth, as you know I am a physical therapist.  I just have to say that I have never seen a gait quite like yours." (I was smiling - this is an interesting observation by someone who doesn't know me).  "Did you have an accident?"  "No.  Guess again." (still smiling)  "Cerebral Palsy?"  "No.  You have to guess one more time before I tell you." (still smiling)  (look of being totally perplexed) "Were you born with it?"  "No...  I have MS."  "But...  you are so young."  "Yes, but I've had this for over 20 years."  "But you were young to get it."  (my thought: yup.  It's now over half my life.  It is what it is.  There's no choice.)

"I'm so glad you're here."

"He's really glad you're here.  He couldn't wait for you to get here."

(I'm excited to be there.  It feels like I spent a year looking, and in the end, I found something that seems perfect.)

Me: "Hi." (to someone who used to work with me, years ago, when he was a supervisor moving up quickly and I was getting to be well-known as a programmer/analyst)  "Hi Beth."  Hug. 

"Beth, you're coming back tomorrow, right?" (the person smiles)  Of course I am.

Now let's see.  At the old place we had a place I could walk and do loops.  Now there is a large open space, but I can make this work.  It's an out and back approach, with a kind of mini-loop in the middle of it.  This works for walking, but someone called what I do "laps," so I will go with that.  There is a place to walk.

(Inserting Ampyra commercial here)  There was a meeting at a place where I have been previously.  But this time, in walking into the meeting from the parking garage, I didn't get tired.  I didn't get tired going back to my car either. (Some people call my car a van, but I'm still in denial - I would rather drive a car)  Going to another meeting at a different location, I didn't get tired either.  I've been doing 20 minute walks without stopping whenever there's a day I can do that.  It's making a difference.

There's a whole lot more, but these are just glimpses, and this blog is about MS and faith, not so much on employment.  But a new job and MS interact, much as I would like to separate them, take this MS thing, and set it on a shelf somewhere.

Life is good.  This was a good past week.

God didn't get any anger from me this week.  Well, not totally true.  At first I wasn't walking enough which caused an evening of 3 hours of leg spasms where I tried to explain that I couldn't walk as much these past couple days, and could God perhaps cut me a break, given it was Ash Wednesday?  I promise, God, I will walk more, on Thur and Fri (ha - as if God sent the spasms - but in these moments/3 hours - I think I should be able to make some kind of deal).

Stop.  Look.  Listen.

I'm stopped.  I have looked.  I'm listening to a song my husband has on the radio - I don't like country music at all and he has country music on.  But this is a song I know and like - it's called "I Hope You Dance."

So I'll end this one with the lyrics.  It's about always looking for the amazing, never taking things for granted, looking for open doors where doors seem closed, never giving up, and always, of course, dancing.


May You Dance:
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance

I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin'
Lovin' might be a mistake, but it's worth makin'
Don't let some Hellbent heart leave you bitter
When you come close to sellin' out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance

I hope you dance

I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance

Sunday, February 10, 2013

20 years

"It's been 20 years?" I asked my mom.  "Well, yes."

I had forgotten.  It has been 20 years.  It's been 23 years since I woke up with tingly legs, marking the beginning of this thing that, on Feb 11, got a name called MS.

"I have good news and bad news for you.  The good news is...  The bad news is we have found spots on your spine which indicate you have Multiple Sclerosis."

"Should I just lie down here on the floor and die then?"

(Look of shock) "No....  there is someone who works in the lab here who has MS...  there is someone getting their Masters who has MS."

(me) "Mom, I think I the type of MS means I have will not be the easiest path, but I won't have the hardest path.  I think MS will always affect me and be a big part of my life.  But I think my life will continue, and I will always be 'Beth.'  I won't lose my identity."

Life is like a river.  It changes course, sometimes moves more quickly than other times, sometimes gets stuck on rocks or bunches of grass.  But it continues.  Sometimes those grassy spots seem to never end.  If we break through the grassy spots, we may find a fast flowing river again.  With MS, there may be more rocks in the way, more grassy spots, and perhaps a slower river.  But one never knows when that river may pick up again, and so, I've always looked for the breakthroughs, and have found some.

My doctor was right, and I didn't just lie on the floor and die.  I got a job.  I went back to school.  I got married.  I am a mom.

There's been a Facebook "thing" lately where someone gives you an age and you answer questions based on that age, and the same questions today.  I was given 19, very close to age 20, when I was diagnosed with MS.  It's interesting to fill this out, thinking of 20 years ago.

On Feb 11, 1993,
I lived in: a small and dark dormroom at Kenyon College in Ohio
I drove: my friend Kelley's car to many dr appts in Columbus, an hour away from Kenyon
I worked at: N/A
I dated/married: too busy going to the dr for these things
I feared: I don't know.  I was in a cloud.
I wanted to be: alive.

Now that it's (almost) Feb 11, 2013
I live in: Colorado, which has always been home
I drive: do I have to say?  I do drive!
I work at: I will be starting a new job on Feb 11 at an organization called CIVHC.
I am dating/married to: Dave
I fear: depends on the day, hour, minute, etc.
I want to be: happy, successful in all I do, and someone who never gives up.

So, 20 years ago on Feb 11 I went through a day that was horrible, filled with tests which led to "you have MS."  This Feb 11 I start a new job.  It's quite a different kind of day.  I find it somewhat strange that it's almost an opposite type of day.

Throughout these 20 years, I have looked to God, and considered "suffering leads to endurance, which leads to character, which leads to hope, and hope does not disappoint us."  I find myself at all stages of this continuum, which wasn't written as Beth's stages of life, but I have used it that way.  As a sidenote, I don't like the word "suffering" in the context of MS.  I live with MS.  Since it's my blog, I would like to substitute "living with MS" in place of "suffering."  Blogs can be so much fun!

I have said "Why, God?" "God, seriously, are you kidding?  This is too much." 

I have actually screamed (alone): "God, I cannot take this anymore.  How long must this continue?!"

"God, I know people say God never gives you more than you can handle, but I have more, I really do."

"Thank you, God."

"God, this is a gift."

"God, could this be true?  This is simply wonderful."

And here I am, 20 years later, amazed.

It's been quite a journey, God.  I am amazed, thankful, and happy."


Friday, February 8, 2013

A chance

I've been on Ampyra for over 2 and a half years.  If you look back at many of my previous posts, they may well qualify for an Ampyra commercial.  Ampyra is thought to help the walking ability for one in three people with MS.  It went through extensive clinical trials, in part to determine the correct dosage.  It was shown, basically, to increase the speed of walking on average by 25 percent over the course of 12 weeks.  That was the trial.  Drug approved by FDA.  The end.

25 percent doesn't sound like a lot.  But reconsider...  this was for the entire sample of people.  We're hearing that Ampyra works for 1 in 3 people.  Thinking generally, if that is the case for Ampyra, then if you do some pretty basic and not FDA-approved math, you're really finding that, for the people for whom Ampyra works, it improves their walking speed by 75%...  over the course of 12 weeks.

What happens after 12 weeks to those people?  MS is very individualized, so every person is different.  For me, I could only walk about 25-50 feet before Ampyra.  After 4 months, it took me about an hour to make it around a track (which is much further than 25-50 feet!).  This fall, so about 2 years after starting Ampyra, I was under 20 minutes around a track.

But what was not tested?  What was not tested was everything outside of leg muscles.  If Ampyra fixes connections to make leg muscles work better, then it makes sense that Ampyra will help other muscles be stronger as well.  And for me, this is true, but an actual clinical trial can only test a limited number of things.  So I have stronger core muscles which is very important.  I have stronger hand muscles so I can now write.  If you think of any muscle, it's stronger.  Beyond that, unexplained, is I haven't had an MS exaccerbation during that time, and I've only been sick once.  My mom remembers when I would have exaccerbations - the fatigue, the falling, and how tough they were mentally.  I don't tend to get sick, but since Ampyra, I have had a lot of stress at times and still managed to stay healthy.  There is something there.  For me, for now, the course of MS has been reversed some...  well, 75%...  I am 75% better than I was, but I still have a long way to go.

It's probably because, as I've said previously, my MS is different (everyone with MS will tell you the same thing - theirs is different).  I've never had brain lesions.  I had two spots of lesions on my spine.  One of those spots is gone.  The other lesion area is small.  Yet I have so much trouble walking - it must be the broken connections that occur on conducting nerves, as a results of the lesions.  Those broken connections are where Ampyra works.

I've been on Provigil for longer than that...  I don't know how long.  Provigil has been studied in MS with mixed results.  It is thought to improve energy in people with MS.  For me, it has done just that.  I believe that the combination of Provigil and Ampyra may be part of why I am doing very well.  When I forgot to take Provigil one day, I couldn't stay awake.  Other bad things happen if I don't take it for a couple days.  Provigil recently went generic so it is a lot cheaper now.

Some insurance companies cover Ampyra.  Some do not.  Some insurance companies cover Provigil for MS.  Some do not.  If you have to change insurance companies, it can be, well, I am speechless.  One company may cover Ampyra for MS, the other may cover Provigil for MS, and neither may cover both.

It's fascinating... the combo of 2 drugs has, I believe, altered my life completely.  I'll find a way for it to work, to get both drugs, but when someone has been two drugs for so long, it's hard to imagine that those drugs wouldn't be covered (maintained), or that there wouldn't be some kind of mandate about coverage.  I'm all for mandating coverage for contraceptives, but what about other things?

And if we're talking medical necessity, I can think of a bunch of drugs that are not medically necessary, but that are covered by both insurance companies.  So that argument doesn't hold.

I believe that everyone deserves a chance.  There are other insurance companies that do not cover Ampyra.  So other people don't get the chance to try it - even with my current insurance company, my doctor had to push a bit.  And it's a lot less expensive than many other MS drugs.

I was getting my wheelchair fixed the other day.  As I was waiting (for 45 minutes), a woman was in the store talking about her power wheelchair.  I wondered what her story was.  What seemed clear to me is that she was extremely obese and was currently in a power chair.  The questions she asked led me to believe that she likes to stay in the chair as much as she can.  She hasn't used a manual wheelchair for a long time.  She is on Medicaid.  Her current power chair was $15k.  Her new chair will cost $22k and I am assuming Medicaid will pay for this.  She was on oxygen.  She had 2 hips already replaced and needed another one, but she is not healthy enough to get one.

What was her story? How did she get to this point?

As I was about to leave, I heard her say, "I have MS."

Before she got to where she is now, assuming her obesity came after MS, what if she had Ampyra?

I know that may be a long shot for improving where she is now, but what if she wanted it and insurance hadn't covered it?  What if she had been someone like me, and it would have worked?  Wouldn't quality of life have been a lot better?

I know I'm inserting a lot of assumptions here, but doesn't everyone deserve a chance to be the one in three where Ampyra is a miracle?  If it doesn't work, people stop taking it, because the side effects are not fun.

I'll figure out a way for everything to work for me.  But I'm thinking...  I got a chance.

Doesn't everyone deserve a chance?  How can we get people a chance?  How do we assure that, if they move between insurance companies, the good things remain intact?

If we cover other drugs that do far less, if we mandate coverage for certain drugs, free preventive screenings, etc., then what about this?  What about quality of life?  Are we considering that?

Doesn't everyone deserve a chance at increased quality of life, a chance at a life turned completely upside down, flipped, turned this way and that, but in a completely unexpected, miraculous, amazingly good way?

I believe they do.

So now what?