Glances

As I said in my last blog entry, sermons this Advent have centered around us (people listening to the sermons) being invited to do various things in a more conscious way (see last blog entry for a few of those).  It's a lot about noticing the world around us more consciously, with God in the middle of all of it.....

I went to Target to shop for Christmas presents recently.  My daughter had a playdate so she was gone and couldn't ask to go with me.  After the past 2 days of a few too many stores, maybe she wouldn't even want to go to Target!  That's another story.

When I arrived at Target I parked next to a guy who slowly got out of his car, glanced at me, and got out a walking stick for each arm - not as replacements to his arms (!) but as sticks that he used to help him with balance as he walked.  Maybe some would call them canes but they clearly weren't, and they weren't the crutch things you see people use sometimes.  They were like the walking sticks I  used to use because I hated the thought of a cane in my late 20s (canes are ugly), and the walking stick actually gave more stability than a cane.  The man slowly walked into Target as I sat in my car, finishing an email or something on my iPad.  I wasn't quite ready to go into Target, but I sat and wondered how he was going to navigate the store with the walking sticks.  Then I realized he was probably getting exercise to get into the store and then would use an electric cart if he needed to cover the whole store.  Sounds like something I would do (but I had already done my walking exercise for the day).

I finished whatever random thing I was doing on my iPad and got Nemo, my wheelchair, out of the car. Then I did my shopping.

I finished and came back to my car to see his car was still there.  I put Nemo away and was leaning on the edge of my van for balance to get in.  As I did this, I saw him arrive at his car using an electric cart.  He put his things in the car and then, while I wasn't looking, got rid of the electric cart and, as I happened to look back his direction, saw him leaning on his car to get in.

He looked at me and I looked at him.  That glance seemed to hold a lot, perhaps only for a certain group of people.  The glance said we are through with our shopping, we got what we wanted, and we're ready to go home.  But it said something more that is hard to describe - 2 people with seemingly similar disabilities knew the shopping was not as simple as getting what we/I needed and going home. Shopping can involve we/I simply having the energy to go to the store (this is different than the average energy someone without a disability faces when going to a store), an assessment of how much we/I needed to buy, and how much more energy we/I would have past what we needed to buy.  I suppose it's somewhat like if you have an infant, you do not get to choose many aspects of shopping - you get to shop as much as the infant allows, which will differ for each shopping trip, depending on the baby - totally out of the parent's control.  This is still a bit different - it's about having half, or less, the energy of someone without a disability before even getting to a store, and having to add into the equation things like getting a wheelchair out of a car and back in, as well as the after-shopping events of getting home and having the energy to get in the house without falling, etc.

In the brief glance, we exchanged that we got the things we planned to get in shopping, and were done.  It's then that we both probably went home and not on to another store.  With a disability, energy is carefully prioritized.

After the glance, I noticed he had his key in his mouth as he leaned against his car, working his way toward the door.  Wow - someone else does that too.

...

There's a wonder of God around us during this season.  If we choose to pause even if it's to spend a few minutes with the iPad; if we choose to notice those around us, we may see people so similar to us, at a time when perhaps we may feel like we're the only one.  I wasn't the only one shopping that day with a set of limits imposed on me.  Look, God would seemingly say, there is someone just like you.  Now take up your things and go home, both of you.

We've been invited into the wonder of it all, God at work in the world.  Sometimes it is in small moments like these that we find amazing wonder.

Peace.

In an instant

It is Advent.  This Advent, we've (people who have been to our church the past couple weeks) been "invited," via sermons to do a couple things.  We have been invited, during this time of Advent, to look where God is at work around us, as well as in our lives (also to find God moments, not that we necessarily feel God's presence, but we do know that God is at work).  We have also been invited to find moments/times of silence during this busy season, to think about things other than the busy season.  During these sermons, I think terrific, I will do this!  God is at work - yes, God is!  And although I'd like to say I made time for silence, the reality, this year, is that silence has been forced on me. It has been an interesting Advent.

This past week, when I was thinking I'd find these God moments and times when God is at work in my life, I was slammed with the reminded that, in an instant, life can change for anyone.  Just when everything seems to be going as expected, the unexpected occurs.

Several college Facebook friends of mine from college have a friend, who also went to Kenyon, who left this world at too young an age this past week, after too short a battle with something she shouldn't have had at her age.  She had a blog which I have read mostly, and what was evident were sudden changes.  After the initial shock of "you have this," a physician doubted she had any chance.  Pretty soon, she proved him wrong.  Ha!  Take that!  It's gone!  But then boom!  It was back, even though she felt fine.  In between times of good and bad news constantly causing her to shift the course of her life, she traveled, spent time with her kids and husband, and seemed to love life.  She showed what I would imagine we all strive to have in life - happiness, the ability to have fun, relax, and laugh, and not to take things too seriously (unless that is necessary).  She showed love of life in the face of horrific "surprises" that showed the fragility of life.  Her blog made me think that I could do a bit better in my life, where unexpected good and bad things happen, in an instant, without warning.

Back to my life, finding where God is, and silence.  I like to think I'm in charge and my overactive immune system means I will never get sick.  Everyone else gets sick.  I do not.  I fought off a small something - a little sore throat one day, something else the next, etc.  I'm in charge.  Hey God, we're good - I'm healthy, all is well.  But then...  last weekend my daughter had dance recitals so I was out in the cold a lot (REALLY COLD!), plus my daughter was sick.  I was fine.  Nothing could touch me.  Yup, all is well.  I had a conference and a final choir rehearsal for our concert...  I was coasting!  I had just walked my best 400 time since I started walking around the track.  Check that out!  Last season I ended going around a track in just under 17 minutes.  I'm now almost under 15 minutes!  I rock!  God was doing good things!  Unstoppable Beth!

And then, I coughed.  Then I coughed again.  And again.  Over the day this cough grew and grew (but just a dry cough) and in between coughs I would gasp for air.  No God, I thought we had a deal or something!  I was unstoppable, trying to break 15 minutes.  I really did not have time for some strange virus.

I went to bed.

Every morning I wonder if  I will make it out of bed.  I think many people with MS do that.  I lay in bed and ponder whether my legs will work.  Then I sit on the side of the bed and do the same thing.  Then I "launch" myself and discover that all is well.

But that next morning I lay in bed and wondered how I was even going to roll over. Everything had changed.  This was not the God moment I wanted.  It also was not the type of silence I wanted.  I mean, no, I didn't want to lie in the silence and wonder if I could roll over. 

I was sick.  I had a fever.  When I get a fever, I can't walk. I can't even get up.  And that morning, rolling was questionable.  I rolled... a bit too far...  off the bed.  Dang!  Bad miss.  It was quiet.  The God moment was me asking God how I was going to make it to the bathroom!  I scooted myself to my wheelchair which I had left close to the bed, because I had started to feel sick the previous night.  When this stuff happens, doing something as simple as making it to the bathroom gets broke into little steps...  Scoot to the wheelchair...  step 1 complete.  Step 2: get into wheelchair, with no strength.  But I did it.  Step 3: Wheel to bathroom made and attempt to pull myself up onto the sink and walk a few steps to the toilet.  Step 4 land on toilet.  I made it.  I sat there, and sat, and rested.  Silence can be scary, right God?

Now, to get up from the toilet.  Ha!  God, is this a joke?  It is silent but this God series of moments has not left finding the love of God's work.  Right.  Standing was not an option.  Nothing was working.   I scooted myself onto the floor and then over to my wheelchair.  This is the part where I am supposed to pull myself onto the wheelchair.  After about 10 attempts and 20 stern words with God on how this sucks, I realized I didn't have the strength.  So I pushed the wheelchair out of the bathroom and scooted out of the bathroom, to a white chair that is lower than the wheelchair.  Great idea!

Once I pulled myself into the white chair,  it was a great time to rest.  Boom! My leg jumped..it didn't want to stay still.  So, I transferred to my wheelchair.  Done.  There is still silence and God, you got me into my wheelchair.

The rest of the day was full of more silence and stern words with God. 

Dear God: It is Advent.  I'm looking for good moments here. I don't need periods of silence where I contemplate how to get off the floor.  Everything is wrong, turned upside down.

Amazingly, after 2 days, I got over this.

Now I can search for the good.  Now I can search for moments of silence.  Now I can do what was intended.  I can follow the example of the lady mentioned near the beginning of this blog.

Tonight we had our lessons and carols service.  At the end, we sing a Peace song.  It's beautiful.  Out of nowhere I was caught in a God moment, with the good of this service spreading throughout the sanctuary and bringing tears to my eyes.  In an instant, the moment was gone.  There will be other moments.  I'll find the silent moments.

It's all there - as we live moment to moment, not knowing what to expect, and when.  We do know that God is there, even if God takes the words thrown toward God aren't nice.

Peace.

Shoes, walking, and other thoughts

One woman wants to walk down the aisle of her sister's wedding, wearing a pair of high-heeled shoes.

One man states: "You gotta crawl before you can walk. I gotta retrain everything. I'm like a giant kid -- a big baby." (Craig F. Walker, The Denver Post)

- "I will walk again."

- "Will I walk again?"

(www.denverpost.com/paralysis)

---------------------------------------------------------------------------------------------------

I wanted to walk around the track.  I did.

I want to run.

How far? When?

God?

All similar, yet each an individual, each very unique. 

Walking.  Writing.  Reaching.  Bathroom.

Running.  Dreaming.  Doing.  Step by small step.


No Cure.
Look Up. Plead. Bang fists on ground. Yell at God.

Progress in the absence of a cure.  

"Locomotor therapy."
Stimulate nerves using electrodes to deliver shocks to dormant muscles; Remind muscles how they are supposed to move. 

Bioness. A device which sends signals directly to muscles to help lift the foot. Approved for incomplete spinal cord injuries. Considered experimental for MS. Muscles strengthen.

Ampyra. 

Improve nerve conduction.

Walk.  Strengthen.  Hope.

Physical therapy.  A constant, for life.

Hope.  Hope does not disappoint; hope encourages.  Never give up, ever.

Continued progress.  Kneel down at ground level and rise up, using a chair to teach mucles how this works.  Try again.  Eliminate chair.  Try again.  Think quads; push up.  Think butt muscles.  Push up harder.  Think back muscles.  Reach.  Hold.  Balance.  Hold.  Sit down.

Look Up. Smile. Give thanks to God.  As for more.

Get back to work.

Individuals.  Individual needs.

Critical support from family and friends.

Individual.  Unique.  Alone.  One woman working toward wearing heels for her sister's wedding; another man working on crawling; another person using exoskeleton;

Me, my walker, Bioness.  God?

Alone.  Yet there are other people who are alone.  And then we are, together.

I have new incentive to get back and test limits instead of dwelling on alone and leaning about why bother.

Peace.

Hi Beth

"Hi Beth.  How can I help you today?"

When you have a chronic condition like MS, it's important to find a physician who you like and trust. What makes this happen?  It's so different for everyone.  Today I've been thinking of what is important to me.

It's that my physician calls me Beth.  He called me that in my appointment today, and he ended with my name.  I never realized that's important, but it is.  They have my name in their system so I am never called Elizabeth.  It's also personal.

I didn't want to talk about MS as the main thing, so we talked about the other thing.  Then he still checked MS because it's his job, he still told me about the new MS drug I won't take because it's his job.  He also did this stuff, I think, because he cares.  That's something else that's important.  He knows I won't take the new drug, but he tells me anyway.

And there are the tests.  He's still interested in the ulnar neuropathy I have which is not MS.  He knows I won't have surgery for that, so he told me about a brace I could wear at night which might help.  And then he said, "I'm not a dermatologist, but right here your hands are way too dry and you need to work on that, and here's a suggestion."  It's about caring.

He's a numbers guy and I love numbers so he spits those out and I love numbers too.

I think he "gets" Beth.  She's going to walk.  She knows what she wants and doesn't, and it's hard to change her mind so don't try to hard, but catch her with the unexpected so she knows you care.

The office staff seemed so happy and I like that, and they said , "Bye, Beth."  You can tell when employees are happy.  That's important.

When I walked out, he watched and said I look better than in June.  That gives me incentive.  I've been in a bit of a funk lately, but what other people say builds me and helps.  There's more to do...  more progress to be made...  I know that.  But I think it's taken a few other voices to help me try to get back on track from feeling something...  I don't know what it is...  stuck...  I've even brought this to the attention of God...  get me back on track.

Slowly I'll find my way.  But back to physicians - it's about feeling that they do know a lot, but with all that knowledge, that they have some level of caring, and that they use my name.  Beth

Peace.

It's all about the shoes

Beeeep!  The Bioness control unit went dead, completely dead.  It was Tuesday.  We were to leave for NYC on Sat.  This was not good. Without my Bioness devices, I can't walk with shoes, unless, unless, I go back to my AFOs, which are ugly leg braces.  After leaving those old ugly leg braces in my car for well over a year as backups, I had decided to remove them from my car.  The AFOs have to be worn with ugly, no good, big, clunky shoes.  Take my word for it.  One beauty of Bioness is I can wear somewhat regular, non-clunky shoes.  Take my word for it.  The explanation needs pictures and would be boring.  Would I have to go to NYC with the big clunky ugly and now old shoes?  Oh no.  Please no.  The Bioness devices have helped my walking so much.  I look a lot less like a duck now...  I'm not swinging my legs out as much. I am walking heel to toe again.  But when I think about it, the biggest plus is the shoes.  And so you know, the controller just needed a new battery, so I'm ok now. I got to take the Bioness devices to NYC and wear regular shoes.

This sudden beeeeeeeeeeep! made me think back to the days of the AFOs.  It started with a big ugly tan one.  I was having trouble walking down hills.  I met with an orthopedist, who had a big ugly tan AFO thing made, which required ugly clunky shoes in which to insert the thing, but allowed me to walk down hills again because it helped me lift my toes so I didn't trip.  Over time what I didn't realize was that by helping, it meant I didn't use some muscles as much and they atrophied...  translation: the muscles were wasting away.

When I started taking Ampyra, I went to physical therapy and the therapist thought a different brace, a slightly less ugly black one, might help me more.  I saw the same orthopedist... he owns a place that makes and sells AFOs, but he only makes the ugly tan ones, so he was a bit tentative about me getting a black one which would not be made by his company.  Surely they weren't as good as ugly tan.  Then he held up a different kind of black one and laughed at it, as if it was useless, so at least I wasn't asking for it!  What he didn't know was that, at physical therapy, I was using that exact other black brace which made him laugh, on my other leg, and it was working well.  But we were still dealing with clunky ugly and now old shoes.  Muscles were still wasting. But the black AFO did look and function better.  Thank goodness for physical therapists!

Finally...  enter Bioness.  The guy who makes the ugly tan AFOs agreed to meet with me and the Bioness representative, who as a side note drove a BMW.  In 90+ degree weather I went to his office where the air-conditioning wasn't working well, and in the 85 degree heat I proved that I couldn't use the Bioness, because my walking wasn't good enough, in the 85 degree heat.  I was destined for big clunky ugly old shoes with at best ugly black AFOs.  Something didn't feel right.

Almost a year later a friend of my mom's had me try her Bioness.  It was a totally different experience.  Rather than go back to the ugly tan AFO sales guy who at one point also told me to look toward heaven instead of thinking about this life so much (true story!), I went through physical therapists who were not Bioness reps and also did not make ugly AFOs.  They determined Bioness would definitely help, first on the right leg, then on the left.  There is no muscle wasting, because these devices stimulate muscle contraction, the kind of contraction that allows my toes to go up. 

And then, guess what?!!

Shoes, shoes, shoes!  I realized I didn't have to wear the ugly clunky old shoes anymore.  I didn't have to talk to the "buy the ugliest tan AFO ever while I tell you to look to heaven" guy anymore.  I realized there are those people who claim to be out there to help people like me, and maybe they do help or think they help while they are working on their profits.  And then there are, in general, the physical therapists.  They want to see people be the best they can be.  They want to push people toward that end.  And if the end goal is the shoes, then they are all for it.  Over the past 3 years, physical therapists have been wonderful.

And the people selling the AFOs?   Most of them are fine.  I'm sure many have good intentions.  AFOs are appropriate for many people.  But what if they aren't?  Can the AFO types step back and recognize this is an area for physical therapists to determine?  I do wonder if the guy who wanted so badly for me to wear the ugly tan AFO which caused muscle deterioration, who is also the same guy who told me to look toward heaven because life on earth is only temporary, is clinging to his business.

A big problem is that while I can look toward heaven, I still am making the most of life here on earth.  I am not going to just give up.  Would he?  Wouldn't he opt for the Bioness?

At the end of the day, it's about the shoes, I'm on earth, and since I'm here, I want shoes I like. 

Peace.

My little room

We spent this past weekend at Rainbow Trails Lutheran Camp in Colorado, where there is a Labor Day retreat. Most people go to this to get away and relax - I do too. Each year I wonder if it will be as "magical" as in the past, and each year it is.

The past 2 years, I've gone to the retreat with some serious "issues," and I've found the retreat a place/way to hand the issues over to God, as much as possible, so I can just sleep better at night. This year I didn't have the same big issues. Something was/is bugging me; I'm not sure what it was/is, and I really didn't know if I would have the same type of experience.

This year was great in many ways. One thing I realize when I go to things, or one thing I remember when I go to things, is that I really don't like to be alone. That may surprise some who know me or knew me when I was younger, but it's true. I pack everything up from our cabin for the day, and I don't really go back to the cabin until night. I don't want to go back simply because I don't want to be alone. I enjoy getting to know people, and this year I met some new people and saw people I had met in the past. So there is that.

One thing I think was/is bugging me this year has been the effects of the summer heat. It hasn't been as hot this summer as it was last year, but I've been to some hot, all day track meets for my daughter, and doing that has been killing me. This retreat has been the place where I realize my legs do still work, and I think I was nervous about it this year. But, they worked! It's fascinating... drop the temperature by 20 degrees and everything works better. I was standing straighter and adding a new drill I made up after working with my physical therapist. Someone asked me how often I exercise and I responded "as much as possible." The temperature dropped even further with a huge rainstorm, and I just kept walking. This year I was walk much longer than in previous years.

 And finally, there's the handing things over to God thing. There's a song called "My Little Room" that we sing each year. The lyrics are something like this:

"When the lightning’s laughing/ And the thunder laps are crashing/ Remind me that you’re asking, for me to go inside of My little room/ where I can pray/ and trust that God will find a way to/ even on the darkest night/ fill the sky with little sparks of light."

We were singing this the first night and it really hit me - there are so many parts of life that are difficult; there are many times in life when thunder is crashing, we wonder if things will work out, perhaps we doubt ourselves and our abilities, and we wonder about the motives of others. These are the times when we should pray and trust that the promise of God's Grace will guide us. Let go of so many things that are overwhelming about life.

The weekend was as amazing as it was in other years. In other years, I've had specific "issues." This year, all the little things can creep up on us, and rather than jumping from one thing to the next without trying to hit the panic button, maybe we should take a step back and trust God.
Peace.

Why walk?

Someone asked me "Why walk?" today.  It's not the first time this has happened.  So I got to thinking, maybe I should, instead of trying to explain it, turn the question.  Why do you walk?  Why does anyone walk?  Why don't we all get wheelchairs and sit?

Things would be a lot easier this way.  This way, people would be at more of the same height, I mean, relative to if we all stand.  We could all see the world from the same height, and we could wonder, what is above us?

If we all used wheelchairs, we could totally eliminate stairs!  Ramps would be everywhere, and no one would have to take a special route to get anywhere.

Prices for all the stuff needed would go way down!  Bonus!  Think cars...  they'd all be made so wheelchairs fit.

This is sounding fantastic!  Order the wheelchairs!!

Wait...

People would wonder what is up there. People would realize that ramps are long.  Shoulder repair surgery would go up.  Leg cramps would increase.  There would be even fewer stalls in womens' restrooms (reason enough!).  We would need more elevators.  The obesity epidemic might get worse.  And there is more.

Perhaps everyone should spend a day in a wheelchair first, to try it out.  It may not be so popular.

Then people may realize why they walk. There are so many reasons.

Why walk?  Look in the mirror.  Why do you walk?

Peace.

Are we serious?

After each tragedy in this country in which behavioral health has played an obvious role, people say we need to be more serious about identifying behavioral (mental) health "issues," as well as treating them.  A new theme in healthcare is the integration of behavioral health with primary care (primary care includes things like family medicine and pediatrics...  it's not specialty care like neurology).  That means if a person goes for say, a physical, their primary care physician may identify something like depression, and the idea is they may then work alongside people who specialize in behavioral health to assure the person receives treatment and continues to get support.  Another idea in this area is to locate people who specialize in behavioral health within primary care clinics, so they are right there if someone needs something.

This is all fantastic.  There are even grants to help with this integration of care (integration means instead of siloing different parts of medicine, all the different parts talk to each other).  This works great, I think, from the standpoint of providers, assuming they can work together, assuming they have the freedom to identify and treat according to the needs of each individual.  In medicine, there is the idea of patient centered care, where the individual patient and physician would strive for the best care for that patient.  In addition, which seems to conflict a bit with the term patient-centered, there are guidelines which say if you have this disease, then these treatments are what you should get.  Further, guidelines may say that you should not get this other treatment because it hasn't been proven to work for this disease.  Then the problem becomes the clashing of guidelines with personalized care, where as I said, everyone is an individual and everyone responds differently...  patient -centered.

Step away from behavioral health for a minute to the MS world.  Ampyra is approved for MS, to help with walking, but it is only supposed to help so much... it has helped me more than it should have. Provigil is approved for narcolepsy and sleep apnea; it has mixed results with MS in terms of improving fatigue.  If you've read my other blog entries, you might discover that I don't tend to respond to what the guidelines say I should.  That is why it is critical that a patient like me is engaged in their care and works closely with a physician; otherwise nothing may work. Ampyra has helped me a lot; Provigil in combination has meant that I have more energy.  Neither should work quite like that.  Both do.  In combination.  This is personalized medicine over guidelines.

People may criticize personalized medicine over guidelines, in part because they may say that physicians like to prescribe medicine just to prescribe medicine.  Actually I have heard this a lot.  It's a common them.  Providers are supposed to treat disease z according to guidelines.  I find it interesting.  In my case, Ampyra and Provigil were medicines at my request, due to lots of research.  I pushed for them.  Physicians then had to support me.  I went on Provigil after trying 2 other things for MS fatigue.  MS fatigue is different than just being tired mentally or physically, and it's very hard to explain.  It's what happens at the end of a day when someone comes home exhausted...  so exhausted they just sit the and grab something to eat, and just  sit there, unable to sleep, with the thought of moving being "too much."  You really can't understand it unless you have it, and not to be snobbish, but you can't relate other types of fatigue to it.  It's often the point at which I just sit there and say, "God, this sucks.  How long will this last?"  But the combo of Ampyra and Provigil has largely taken it away.  I haven't come home and sat with a piece of bread without moving for a very long time now.  But darn it!  I am not following those guidelines!

Back to behavioral health.  Someone came to me once, because I'm this disability rep or whatever you want to call it.  They told me they had switched health insurance.  The new health insurance was following guidelines!  As a result, they were taken off their routine of medications, the routine that worked, that was personalized, and that, of course, didn't follow guidelines.  They told me it was affecting their ability to function.  They were having a hard time working.  They couldn't continue this much longer.  This was all a behavioral health issue.  It gets tricky because in behavioral health, patients can keep things secret.  Most often no one knows anything.  I have had other conversations like this one.  They are all very confidential...  "I have bipolar.  Please don't tell anyone.  I don't know what to do."  Then I go to meetings where people joke about making sure to take their happy pills; where people joke about behavior.  I sit there and wonder, in those meetings, how many people just may be taking those happy pills, or have a behavioral health diagnosis, in the meeting?  How many people struggle to find the right combination of medications in order to live their lives; how long does it take them to find the right combination, which probably doesn't follow a guideline?  Medicine is personalized.  Physicians are helping to find that balance.  They, like their patients, want their patients to be able to live life to it's fullest.

What gets in the way is insurance.  A patient may find the balance in medications.  It may have taken years to do so.  I found the Provigil Ampyra balance.  like many people with MS, depression is an extra "gift." If you think about it, it makes sense... Diagnosed at age 20, knowing I wouldn't run competitively. Not exactly a recipe for happiness. Medicines themselves can increase risk for depression, depending on the medication.

So we have behavioral health, including depression, and we have people wanting to integrate behavioral health with primary care.  There's also continuity of care and adherence to medication use, which means if it works, don't change anything!  And then the insurance companies, which are supposed to be a part of all of this, jump in and ruin it all!  They take a look at a prescription and say no, we don't cover that - it doesn't fit our guidelines.

Imagine...  for behavioral health, getting patients to keep taking their medications on a regular basis can be a challenge.  When an insurance company says no, what is the person to do?  If they have difficulty adhering to medications, it seems this is a good reason to drop the medicine.  Then the consequences may be devastating.

What can be done?  Are we serious about treating behavioral health, or are insurance companies more concerned with following their guidelines and saying no?

A few times, I have either gone off Provigil on my own, or not given it, or someone thought I should try something else.  And it has never worked; rather, it causes depression, which comes on very quickly and is very extreme.  This year I have had 2 new insurance companies who have tried to deny Provigil.  I am lucky to have the ability to fight, to remember what happened when I went off it on my own.  The fact that I have to fight leads me to see a glimpse of why people may stop taking medications and fall in a sense - down, down, down...  which leads me to wonder if we are serious about treating behavioral health.

I don't think we are there yet.  I don't know what it will take.  But I will say my last fight was difficult, emotionally draining, when all I wanted was continuity of care and adherence to medications that keep me alive and going.

God?

Peace.

Right versus left

Dear God,

I know you already know what I'm thinking, yet for some reason I'm feeling compelled to write this blog entry as a letter.  I suppose it will make me feel better.  It's also one of those entries I'm writing to keep track of my life, but maybe someone will find it interesting.  You just never know.

Before I decided to take Ampyra, I could hardly walk.  You know.  I would walk a little way, then I would sit on my walker and someone would pull me.  I just read through about 1,000 pages of my medical record because I asked it be sent to me, so I figured I should go through it, and it says I could hardly walk.  I also had trouble writing, and my right side has always been more affected.  All this can happen when a person has MS for over 20 years.  Remember when sometimes I would come home from work so exhausted that I would get a piece of bread, sit on the nearest chair, and eat it?Though I still get tired, it's not as bad as the bread example.  Of course you know that.

Once on Ampyra, I started physical therapy (PT) because I somehow had a revelation of sorts that I
could only get so much better on my own, and I really worked hard at PT for about 2 years, before gradually easing off as I began to be able to do more on my own, some of which I had previously done at PT.  Remember how I started at .2 miles an hour and got to 1.8?  And if felt like real walking at the end?  I wonder what it's like for people to just walk.  I watch them, people, just walk.  Looks so easy.

So at that recent appointment with my new neurologist (because of switching qjobs, and thus, health insurance), you know how I mentioned my numb right fingers because his last question was about numbness?   And then he got a questioning look on his face, and said that type of numbness wasn't normal (is anything?) for someone with MS, and that I needed to be tested for something else.  Was
that your trigger to clue me in on something, God...  everything is not as it seems?  Is that it?  So then
 of course I was tested, diagnosed with ulnar neuropathy, aka corbital tunnel syndrome, and told to have surgery.  (This is actually a common bike injury from putting pressure on the handles of a bike,
much the same way that I put pressure on my hands when using my walker.)  So you got me thinking...  not all things are as they seem, and though I had thought my MS was getting worse in my hands, in reality something else was going on. Want me to tell others, God, that MS can cause weakness, but weakness may be something else?  Well, I did tell some people.  But then this was a trigger for something else I needed to know, right God?  It was an important clue.  I know, I wasn't really getting it yet.  I needed more help, right?

I went back to PT, at a different location, because they had a 7am appointment so I could make it to work.  So that initial evaluation and next appointment was another example of everything not being as it seems.  MS has always affected my right side more.  But in doing various exercises, my right leg is now the stronger side in many ways.  A ha!  I get it now!   And in doing other exercises, my core muscles are stronger on the right.  Talk about flip flop!  Now what?  Now I am a mixture of mostly right stronger and some left stronger.  God, what is the deal here?  Getting both sides the same?

Everything is not as it seems.  Really, it's a big mess of stuff, whether it be my legs, or whatever, and we try to make sense of it and do the best we can.  Like when my daughter brought this stuff in the Stump the Pastor bag... a mess of stuff...  And you, God, help us take that stuff and somehow hold things together...  Today I'm sad for someone else, and it seems like a big mess.  But you'll help people get through that.

And you'll help me get through whatever and hopefully, do the best I can.  I'll look for clues that are out there to help.

Peace.

Downside Up

All I can say is wow.  It has been 3 years since I have had to be on steroids for an MS attack.  Wow.  For 3 years I have been able to wake up each day and get up, even though each day I sit on the edge of my bed, wondering, before rising, if my leg muscles will work.  For 3 years I have continued to improve on the medication called Ampyra.  In those 3 years, my world has been turned "downside up," meaning life has become so much better, manageable, possible, less overwhelming, amazing, wonderful, and the list could go on.  It hasn't been easy - what I have never is.  It doesn't make any sense - other therapies haven't worked, have caused allergic reactions, have had side effects - and this medication comes along and works - and then neurologists say an MS diagnosis doesn't really fit me - and on and on - and I try to make sense of what does not seem to make sense to so many - including me - the impossible as possible - downside up.

Today I woke up, sat on the edge of the bed and wondered, would my legs work?  And they did - I never take it for granted.

This past Sunday the gospel lesson was Luke 8: 26-39.  The main point of this lesson is something about swine being drowned and the loss of bacon.  :)  No, that's just to make you go look up the text if you want.

The text is about a man who has demons inside of him, or he had some kind of mental disease, which Jesus cured.  When people came to see this, "they were afraid."  As the sermon in our church went, one can imagine why these people were afraid, because they had treated the man badly; would the man now remember how they had treated him?

That text isn't about me; I'm not a pastor and have no religious "authority" to explain it.  That's my disclaimer statement.  But it's kind of a "fun"text to use when I substitute me.  It's my blog - the beauty of it, if you want to call it beauty, is doing whatever I want with it.

A woman (that would be me) had a disease for a long time and it kept taking away abilities of hers, so much so that she didn't even realize some of the many abilities she had lost, because she learned to compensate. Others mainly treated her very well, although a few questioned, without basis, her mental abilities. 

Then a miracle drug came along and within 2 days of taking it, the woman was standing for longer than she had in years.  Many people were happy for her and noticed many of the abilities she found again.  She continued to improve and to this day, does not know how much further she can improve. 

In a way, this woman feels like, perhaps, the man from the gospel text must have felt.  She was not put away by herself, although at many times she felt alone and put away by herself, because that can be the inherent nature of disability.

As she got better, it was very exciting for her. 

The gospel text leaves out what happens to the man next?  How did people treat him?  Did he remember how they had treated him?

The woman (me) of course didn't forget how people treated her - both good and bad.  Her world was turned downside up... things are so much better.  The same people who were supportive before she began the new medicine were supportive after she started the medicine.  The people who were not supportive before the medicine?  Well, to be honest, they still weren't supportive.  Ampyra, the "Jesus" medicine if you really stretched things (which I'm not trying to do) really helped equip her to deal with these people.  Only once did they run her down to the point where she questioned why she was being targeted, she questioned how she could hold everything together, and she did get sick, though did not have an MS attack.

So the man in the gospel?  My bet is he still had to deal with at least a fraction of people who tormented prior to him being cured.  This is human nature.

But the point is also not to dwell on these things.  The point is to move forward.  The woman continued to move forward.  She recovered from the sickness, rested, and did not have an MS attack.  She maintains friendships with the people who were always supportive.  She has, at least for now, rid herself of those who never supported her. 

And so I continue to move on.  I'm starting new physical therapy tomorrow.  I have goals.  The goals get harder, but I want to meet them.

I'm celebrating 3 years of being able to stand today.  It's a gift.  Thanks to God for the miracles in life we don't see coming, that don't make any sense, and that turn our worlds downside-up.

Peace.

Anonymous

For many years now,  I have followed what people have to say about specialty drugs - they're the ones that hit the news - the ones taken by people with things like MS, almost as if MS is a choice disease, as if people think there's an alternative to anything that can help.  They are, simply put, expensive.  That's why they tend to hit the news.  Ampyra is a relatively cheaper drug.

("Hey Mom, do you realize I've been standing against the island in the kitchen for 15 minutes now?  That's strange.  Think it could be Ampyra?  It's only been 2 days, but I never stood here after work like this.")

Specialty drugs are expensive - a few cost over $50k.  There are specialty drugs for many other diseases besides MS, and the drugs for the other diseases are expensive as well.  Typically, specialty drugs are used to slow the progression of diseases - diseases that are not very common, relative to diseases like diabetes and asthma.  So although specialty drugs impact the healthcare system, they aren't the most major thing driving expense, since relatively "few" people have the diseases and not all people with those diseases take the specialty drugs.

(Well, here I am after 4 months of Ampyra, at the track.  I don't remember a track being this big, but I walked around it, which took an hour, but I couldn't walk this far before Ampyra.  Who knew life with MS could get better?)

Yet insurance companies have found ways to charge, say, $250 per month supply, or the new thing is 25%, for these specialty drugs.  I wonder, let's see, how much do people really want these drugs / how much can people really afford for these?  If we charge enough, perhaps people will go off them, and then what?  That's what people are discussing... well, people who are not on the medications, or know someone who is on one.  The other group is talking a bit differently, about how they need these medications and it's not their choice.

("So, I need my prescription filled by Friday.  That's when I run out.  Should I go check into the hospital if you can't get this medication to me?"  That was me, with a new insurance company, who fought covering the drug, even though it has been approved by the FDA, and even though they cover Viagra, etc.  I've been on Ampyra for almost 3 years.  I am much better in so many ways.  I just feel better.  If I stop taking it, I will crash.  This won't happen to everyone and you can't place a monetary value on it.  It's quality of life.  For anyone reading this, how much do you value what you are able to do?  Can you put a dollar amount on the ability to hold a pen, to write?  Can you put a dollar amount to the ability to get up every morning?  Can you?  How much is it worth?)

Physicians tell patients that patients with things like MS must be on one of the specialty (expensive) drugs.  Insurers, at a minimum, say patients need a pre-authorization from their provider to be on them.  Then insurers may have other requirements as well, which to me seems like insurers are trying to also play the role of provider, which I believe is wrong.  To this end, insurers have created tiers of drugs, which is how much patients pay.  The patient contribution has increased and is often $250 or 25% per month.  When this first happened, the new contributions were in fine print so when patients came to pick up their normally $20 medication, they were shocked.  Always read that fine print!

(Let me think...  do I want to walk?  Yes, I want to walk!  That $250 or 25% is just cruel.  Quite honestly, I live a very healthy lifestyle.  I don't have risk factors that seem responsible for some other diseases.  So, I don't get it.  It's not like this is my fault, or I could have done something differently to avoid it all.)

The media has a significant role.  They report that wow, new drugs are available!  Then the media reports that wow, the new drugs are expensive!  Various people, insurers, policy types, ...,  then start to voice questions on if specialty drugs are worth the cost... why do drug companies charge so much...  So there are all these people - physicians, drug manufacturers, insurance companies, policy people, all discussing this...  They can be in so many places doing this.  It is assumed, it seems, that during these talks, the main "player" is missing, and no one notices the missing "player."

So what about that missing "player?"  That would be (weird drum roll), the patient!  While everyone has been discussing the specialty drugs, the patients have been listening (often in the same room where it is assumed no one is on a specialty medication - can you say awkward?!!).  Patients are stuck.  Patients weigh information, and are stuck in a game where providers say they must, insurers say ok but we want $250 or more, and different people ask about outcomes.  Patients just want the best quality of life they can have for as long as possible.  Ideas on how to measure quality of life for as long as possible in actual dollars? 

(I think the media ought to run a story where they interview patients on being stuck, rather than on cheering for the new drugs and then giving their prices in a different story.)

Criticism is often targeted toward drug manufacturers...  why do they charge so much?  I do wonder the same thing.  But insurance companies?  Seems a way like the game "chicken," where 2 people head straight toward each other to see who will move first.  Are the drug companies going to budge?  No.  Are the insurance companies going to budge?  No.  The people taking these drugs are left right in the middle.  People will say they don't mean anything against the people taking the drugs, but that's pathetic with this "chicken" game happening.  So I'm going out on a limb and saying people taking specialty drugs are caught in the middle, forced to make difficult decisions they shouldn't have to make, and feeling like there is some kind of target on them.

(I've been on Ampyra almost 3 years now and I don't plan on stopping it.  I feel good.  It's summer and hot, but things could be worse.  I may have to speak up at some point, in a situation that already feels awkward.  Some day, feelings of frustration are just going to come out.  And then, I will no longer be anonymous in the room where people assume no one in the room is on one of the specialty medications.)

Peace.

Children and church

When I was growing up and we, as a family, went to church, we were expected to sit quietly, pay attention until the sermon, write on little pieces of paper during the sermon, and then pay attention after the sermon.  What really happened was this.  My mom would give us each 2 "Tic Tacs" to eat (breath fresheners) before we got to church.  We would then rotate accusing each other of hiding the Tic Tacs for future consumption until we got to church.  Once in our seats, whoever managed to successfully store the Tic Tac without being caught would occasionally open their mouth to show the other 2 siblings their success.  This was the activity before the sermon.  If no one had Tic Tacs, we would try to make each other laugh (to get someone in trouble) before the sermon.  After the sermon, we would imitate the minister who was trying to sing the part at the beginning of Communion.  This was great fun!  We had to do this without being caught - again, part of the object was to get siblings to laugh, thus getting them in trouble.  The point here?  We weren't paying attention, at all.  We appeared to be 3 really good kids in church.  My brothers might have different memories.

Fast forward to my daughter going to church.  When she was a baby, we sat outside the sanctuary (the main area of the church) because if she cried, I thought I'd be too slow to get out.  As she got a little bit older, we went inside the sanctuary and she would play.  She was usually quiet.  I'm not sure if her playing bothered people or not.  Of course she wasn't participating and I remember asking the pastor of our church at that time about her inability to pay any attention.  He surprised me by telling me I would be surprised, that even when playing, she was picking up things.  He said his son was much the same way but in second grade, the pastor realized that his son (who is now an adult), had learned, by heart, all the parts of the service.  So I went with this.  He was right.

By kindergarten, my daughter wanted to take Communion.  We talked about it.  She knew surprisingly more than I would have guessed, so she started taking Communion.  And she kept playing.  At random points she would ask questions about the sermon, or about how the service went.  At some point, she wanted to follow along with the service.  Then she would go back to playing.  Via playing and awesome Sunday School teachers, she just may know more about christianity than I do.

At one point she announced she would like a part in the service, because the older kids had a part, but the younger kids didn't.  A little while after that, younger kids started saying the very ending line to the service into the microphone.  She had a part.  She kept playing. Someone informed me that since she was taking Communion, she should really be following that part of the service.  Kids don't need bulletins to follow.  She was playing and listening.  She has all the parts of Communion memorized. She learned them while playing.

Really recently, she asked to be an acolyte.  And amazingly, she got her wish.  She's pretty bold, and doesn't hesitate to ask for things.  Her friends joined her and were trained to be acolytes.  They're between second and fourth grades.  They had been playing.  Now they are acolytes.  When I started telling my daughter to pay attention to what she needed to do when she got training, she informed me that she already knew.  In fact, she informed me she had picked the robe and cross she would wear!  She had already asked the pastor what was behind the altar and he had showed her.  When I asked if she knew what things she was to do, she rattled them off - she knew more about being an acolyte than me.  "Mom, I've been watching them (other acolytes) for awhile now." 

So imagine that!  Everyone assumed she and her friends have not been paying attention and have instead been playing.  In reality, she's been playing and absorbing.  She knew what the acolytes do.

Now, if only these kids would be quiet and pay attention in church!  And while they are at it, could they follow the church service like we used to do?  I mean (sarcasm coming), then they could work on getting each other to laugh, and maybe they could find some distraction like Tic Tacs.  And then, as a bonus, they would be so distracted in getting each other to laugh, that they would learn much less about the service than if we let them play.  Excellent!  Not!!

In between services, my daughter is very comfortable with the church.  I can't chase her everywhere.  I know she has probably done more running and yelling than she should.  But then again, she and her friends are comfortable in the church.  It's home to them, or a second home.  They have each other and are good friends.  My daughter will be a serious acolyte and then change clothes and play with her friends.  I really wish I had that when I was a kid, but I didn't. If only these kids weren't running around the church and also seeing what is behind the altar, then they would be good.  They could stay with their parents after the service like we did, go to coffee hour, stay close to their parents, not talk to any kids or build any relationships.  Excellent!  Not!!

In church, we talk about people who leave in their 20s.  We talk about parents who do not necessarily come back.  What if these parents who do not come back, knew there is a place for them as well as for their kids?  What if parents knew their kids could play in church, and in playing, their kids would also be learning?  What if parents knew that church could feel like home to their kids, that their kids, because church is home, could build confidence that cannot be built the same way in other places? It's so true.

Recently I was talking with someone who has been to our church 3 times this year, and I asked the person about kids, how things are different now, how kids are playing, how perhaps kids now make noise.  His answer surprised me.  His observation was that that the adults made much more noise than the kids.  "When I go into church, I want it to be quiet.  But there are all these adults before the service starts, making a bunch of noise.  The kids?  I don't even notice them. Sure, there's a bit of noise during the service.  But it's nothing compared to the adults."

Children and church.  If we want to continue to see families come to church, especially young families with young children, we have to be accepting.  We have to know that in playing, there is learning.  We can't judge their behavior, because in it, there is learning.  We have to have church be one of the only places where children can still feel safe. 

In my mind, I think God wants children learning, involved, and feeling safe. I very much doubt God cares how the children have all this happening.  And I think God wants people to support this.

So if you do go to church, listen for those young voices.  They are beautiful.  They are learning.

Peace.

Experiencing the MS Walk (2013)

Yesterday was the 2013 MS Walk, and many people have asked me how it went.

It was the perfect day, or close to it, for people who have MS to have the walk.  It wasn't too hot; it was sunny (but there were enough shady spots and enough cooler air to make the sun ok). 

When my mom and I arrived (my daughter had a soccer game), I heard some people saying, hmm, I wonder what is happening - is it Cinco de Mayo?  That was a little humerous given that, although there were plenty of people without things like wheelchairs, there were a lot more electric wheelchairs, wheelchairs, walkers, walking sticks, etc, than you would expect at an event.

Our team was smaller this year, mainly because people with kids who usually walk had things happening, like my daughter's soccer game ("Mom, since I can't go, can you make sure to get me some free stuff?").  We found each other really easily - normally it's hard to find everyone - and we had a tent where we then hung out before and after the walk.

It actually was ok to have a smaller team for a year. I do like having a big team, but I hadn't seen the other people who came in awhile, so that was nice.  Last year my friend broke her leg in the days before the race, so this year she returned and I got to see her, her parents, and her husband (who can't always make it).  And I got to see my other friends too - those I hadn't seen since leaving my old job.  And then of course it was great to have my parents there.  Community can be big, small, or in between, and this small community was really nice and relaxed.

I started the walk a bit early so I could walk without being in the middle of a crowd, and then my dad and I waited for everyone else to reach us (where I decided to stop and wheel).  3 people then did the longer route so we all split up for a bit but then met at the tent.  I walked the end of the walk and I suppose the difference this year was that, when I crossed the finish line, I wasn't totally dead.

So that's the basic description of the walk.  It was smaller this year in terms of the number of people, and I don't know why.  In a sense that was nice because I could find people, but then again, I'm not sure if it meant a dip in fundraising. 

(Sidenote: thanks to all who have donated; if you still want to do so, here's the link to get you to the right spot for that:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762 -------- I need less than $100 to get to $4,000 because people have also given me checks)

I did something new this year.  After the walk, I was at the Ampyra tent and then walked, on the grass, back to our tent.  I don't walk on grass -  I really don't. But the Bioness has changed that.

So many of us come together for this event every year.  It's community.  At the same time, every person's MS is different, and thus, every person, in a sense, is alone with their MS.

Right now I feel like my MS is this totally strange thing, and it's different; in fact, neurologists scratch their heads about it. I saw another neurologist on Friday and he said, like most neurologists will say, "this is very strange that you have no lesions in your brain." Yup, but I have other markers, and I have had attacks, and this looks like MS to me.  And then, Ampyra is just not supposed to work like that.  "It's a symptom-management drug, and you should also be on a disease-modifying drug."  But the thing is, I have trouble with those drugs.  Several made me depressed and gave me skin sores.  One almost killed me.  After that, who would want to try another?  I haven't had an attack in almost 3  years, so somehow Ampyra has modified the course of my MS.  But if it isn't MS, then it has modified the course of whatever I have, and the other stuff isn't worth depression, skin problems, and almost dying.  I'll never forget the last time I took the drug that almost killed me - my chest got tight; I knew this could be a side effect, but the 3 hours of shaking afterward - I'll never forget that.

Back to the walk - community - but still, everyone is alone with their own MS, or whatever it is.  For me, I lean on God then - I have yelled at God, cried to God, told God I'm not giving up and could God please get me through (fill in the blank)?, wondered why my MS seems so different, asked God what therapy I should take (God didn't answer that one - really God, could you work on giving me some answers?), gone on walks and felt I was leaning on God, sat on my deck and thanked God, took breaks during my walks and listened for God, sat on my deck thanking God and feeling tears on my cheeks.  It's not that I feel a great presence of God at all these times at all, and perhaps that's a big part of believing - handing things to God, thanking God, etc.

It all goes together...  the walk...  community...  alone...  God (for me)...

Thanks be to God.

Peace.

Half full

Since I changed jobs and got new health insurance, I've been to a couple different providers.  I went back to physical therapy at the place where I got my Bioness.  The physical therapist (PT) who used to work with me there has another job, so I had a new PT.  Any new provider makes me nervous - what if they aren't any good?  It's never happened with a PT.

I went into this appointment because I'm not quite sure what to do next. I know what I would like to do next, but I don't know how to get there, and a neurologist I saw didn't exactly inspire me.  I guess I was feeling like this is it, because he said I shouldn't be continuing to get better.  You'd think it's the placebo effect, but a co-worker said, "well, that's one hell of a placebo effect!"

So I walked in and what I love about this place is that no one ever looks at me like I am a total freak... to them, I am walking in as if I am anyone else.  The PT went through my whole case with me.  The thing about the PTs with whom I have worked is this: they are always positive and encouraging - they point out the positive, not the negative.  The glass is always at least half full.

She tested me on many things, pointing out, "see, that works," as opposed to what doesn't work, which seems like the focus of many.

"See, I bend when I walk," I said.  She explained why and what kinds of things might help.

Now if you are a person without a disability, or with a disability, but you can walk and get up, do this: go get a chair.  I realize some of you may try this after reading the whole blog and that's ok, but it's just more effective if you try what I say now.

So, you have a chair.  Sit.  Good dog.  That is not very funny but I couldn't resist. 

Now, your knees should form 90 degree angles.

Now................  stand up!  Easy, right.  Sit back down.  Good dog. (not funny)

Now, move your feet 3 o 5 inches awat from where they were previously.  Now stand.  It should be more difficult to get upnow, but try to get up.  Now you are using your quads to get up, and it's more difficult.

For the past few years I've been getting up with my legs way out.  The PT discovered this for me and said "so much is involved in standing.  I agree.

So now I stand differently and know I can do it.  You use your calf muscles.  I am optimistic.  I have goals.  I know I need to go back to PT regularly.

It's all the small stuff around us, and the small stuff hopefully turns into big stuff.

It's truly a wonderful how things are working, as God smiles.

Peace..

One week

It has just over one week since lives were changed forever at the Boston Marathon. Lives forever changed in so many ways:
   1) Lives lost.
   2) Lives with new disabilities inserted, though nothing was done wrong by those who now have the disabilities. Isn't that often the case? Disability enters life without warning, through no fault of the person who “receives” disability?
   3) Unmet dreams... those who didn’t finish due to the chaos.

Perhaps those who did not finish will return. But perhaps this was their shot at their dream. Perhaps they are left feeling as though they were so close to their dream, but they will never get it.

As I went through last week, though my life is not at all the same, memories came flooding back. Memories took me to the morning I awoke to legs feeling as though they had pins and needles all over them. Disability entered without warning, through no fault of mine. At that time, I thought I had slept wrong. Unmet dream of never running under 19 minutes, yet coming so close. So close, not ready for disability.

Sadness. Anger. Not at those who did this at Boston. Rather, sadness at disability robbing ability.

On Thursday, anger out of nowhere… why anger? Anger at those unmet dreams. I wasn’t done running yet. Ability taken from me too soon, not my fault. I wanted to tell everyone to just leave me alone, go away, I didn't want to talk.

People continue, move on, pursue new dreams, show disability isn’t an end. Then, out of nowhere, events bring back memories and tears.

To me, I wanted some people to disappear and let me be in my own space. Boston was not some "wow, let's hear what's happening now" random series of events. I personally don't care who did it. And it's a bad time to discuss guns and immigration. Time to turn off the news which now focuses on who. To me, now is about supporting those whose lives have been forever changed, and continuing to support them for perhaps their entire lives.

Give people space; you don't know who is needing it for whatever reason. Ask how people are and continue to ask, because disability can be forever.

Never forget. Disability. Boston. Connecticut. Aurora. Virginia. Columbine. Moments of pause.

And also, begin to heal, in whatever way that means.

Peace.

Whoooooo _are_ you?

"Whoooo _are_ you?"

That's an owl, as I sat at a bridge close to our house, the resting place for walks I do from home.  The owl seemed to be talking from the west, and he (or she) is always there, with his familiar sounds, asking who I am - it's always the same.  As I sat there, I thought, I don't know who I am.  Who am I?  I thought I was a runner and an athlete.  I think I'll always be an athlete.  I think that pretty well defines me.  I got a lot worse with MS, and then I have spent the past almost 3 years improving. 

Who am I?  I used to be somewhat of a disability spokesperson, but then I wanted to be in healthcare policy.  I found my way there, and strangely, I no longer want to be the disability spokesperson.  So then, who am I?  I am Beth, simply Beth, and Beth is in her heart an athlete who loves to be outside, and who loves this new walking and equates some workouts with those of when I ran competitively.  Beth never left. 

So owl, I am Beth.  And I had tears then because this is all so strange.  Also, I was worried about being able to get Ampyra with new insurance, and it made me question myself, because I don't ever want to go backward again.  I sat there and contemplated what, of all the trouble in getting Ampyra, was causing me to somewhat question my abilities, and to question why I was upset in a way that was different than just being able to get Ampyra.  There was something more there, but what?

Then I left my resting spot by the bridge to go home.  Had the owl moved?  I was traveling east to get home.  But the owl now seemed to have moved from the west, where I heard him on the bridge, to the east, continuing to ask "Who are you?" and I, irritated, thought, "Where are you and why do you keep questioning me?" right back at the owl.  Then I heard a crow, squawking once, telling me "Go!"  and as I reached a struggling point for me, on the uphill, almost home.  And then a few small birds seemed to urgently whisper, "GO, Go, go."  And then I was home.  Going on walks for me brings with it all the sounds of nature, speaking to me through my imagination.

The next day I was on another walk.  On that day, we had heard the part of the Bible where Thomas needs to see to believe.  So we must believe.  We must believe and yet we cannot see.  Strangely, I translated this into the notion that I must believe in myself.  So this walk wasw on a bike path.  There are 2 ways to turn at the beginning of the path, and each leads to a bench, but I have never walked to the further bench (one way there is a closer bench; the other way there is a bench, but it is further).  But if I was to believe in myself, I needed to go toward that further bench.  So I went.  By the time I reached it, I must have looked really stellar, because 2 people asked me if I needed help.  Guess I didn't look stellar.

I sat on that bench and saw long brown grass swaying in the wind.  There was a stream in front of me as well.  This stream, I noticed, didn't hesitate.  It was small, and moved slowly, but there was nothing in its way.  Tears again.  I think what has bothered me is the inability for certain people to believe in the possible power of Ampyra.  It doesn't work for most people.  So others question its ability to be helping me function this well.  And that questioning is upsetting.  I am not imagining this.  It is reality.

I headed back to my car, thinking I just needed to believe in myself and ignore the doubters, the people who needed to see a bunch of data to believe (ironically, I normally need to see a bunch of data to believe).  Pretty soon, much sooner than expected, I was almost to my car.

Along the way back, there were images and voices from the past - my imagination at work again.  "Beth, you could have won that race, you know that, right?" (Coach Jean Ann) "Beth, here's how you do YBF.  You're almost to the top of the (huge) hill, and you need to think to take 3 steps and then you are done.  1, 2, 3, done!" (the last small hill - Kelley)  "Maintain!  Maintain!!" (through the flat stretch - Coach Martin)  "I got her, the girl from Poudre.  She cut me off.  I'm going to cut her off right here and then just go hard to the end.  See I can push people off the path, too." (and later, between Coach Gomez and I, who pushed who?)  "Someone has to win!!!" (Coach Luckasen)

And I was done, at my car.  I believed in myself.  I think that was a half mile, and I hadn't felt like doing anything that day.  Those are the days of the best workouts - when beforehand, I just don't feel like working out.

Nature urges me on. Voices from the past tell me to win something.  The Bible tells me to believe, and I guess I'm using that, too.  I don't think God minds.

"I think 2 choices in this type of situation. You either give in or you fight it. I intend to fight." Annette Funicello

Thank you, Annette. Your spirit of persistence is right there, too.

Peace.

Don't ruin the dream

This entry is about a doctor appt I had today.  But just 2 minutes ago, I got an email from a family friend on possibilities for training for my next walking goal.  It is strange, but perfect timing, at the end of this particular day, encouraging me to keep striving for that goal.

I have a new job which is perfect for me.  The only bad part was having to switch health insurance and not be able to see my favorite doctor, the doctor who advocated for me, the one who never gave up on me because he knew I wasn't going to give up, the one who told me to follow my dreams.  And so I did.  And I miss Dr. Mulica, or Count, as he is also called.

Today I had to go to a neurologist.  Dr. Mulica is a rehabilitation doctor.  I have never really found a neurologist I liked, but I needed to make sure my medications were refilled.

I told this doctor about how wonderful Ampyra has been and how I haven't had an MS attack in almost 3 years; how I am walking more; how I can now write with a regular pen.  He was skeptical; I couldn't convince him.  To him, not having an attack just meant my MS was no longer that which involved attacks, and it had nothing to do with Ampyra, despite the fact that I had about 20 years of regular attacks (when symptoms get extremely worse) for all of those 20 years, and despite the fact that they stopped completely when I started taking Ampyra.  To him, Ampyra is only a symptom management medication.  He didn't share in my excitement and said he only knew one other person who he said claimed dramatic improvement.  Great.

Then he did a bunch of neurologic tests and I did fine with them; still there was no realization how much I had improved.  And then there was "you know, you have never had lesions in you brain.  You could have this other condition."  Yes, but the fact is, I have been tested for this other disease and the test was negative.  And the fact is I got stuck by a needle, right in the middle of my spinal cord, when I was 20 and alone at college, so they could take out fluid to confirm an MS diagnosis.  I don't think I went through all of those diagnostic tests, which finally showed MS, to think this is something else.  Looks like a duck, smells like a duck.  It's a duck!  It's MS, and if not, it's just Beth's disease, which looks like MS and smells like MS.

Recently I wrote a letter to the doctor who diagnosed me with MS, who told me not to lay down on the floor and die, who told me I could live a full and meaningful life.  I needed to thank him for that advice.  He wrote back and talked about how he used my case a lot, as an example of how important it is to listen to your patient, to really hear what they are saying.

And yet there I was, and this doctor today was not listening to me, but seemed stuck in a mindset that MS is a chronic disease that only worsens.

If we look at medicine these days, it seems there is so much reliance on groups of patients, putting people  buckets, and not looking at the individuals.  Certainly I cannot be different than anyone else; certainly since evidence doesn't show what I have experienced, then what I am experiencing cannot be real.  Or can it?

I think back to when I breastfed, told people it helped me physically, and no one believed me.  I wrote emails to have things taken off websites that discouraged women with MS from nursing.  Other women must have been doing the same thing.  Eventually websites changed. Eventually studies were done which showed what I had experienced - that my MS went into remission.

And here I am, again saying something that can't possibly be true.  After an appointment like that, it's hard to walk away and be happy. 

But then, as I was about to write this, I received the email I mentioned at the beginning, giving me ideas on how to keep improving, from a person who believes in me.

There are so many people who do believe in me; so many people who have encouraged me during the last almost 3 years of my life, where the improbable has occurred, so that it has been much larger than myself.

And if any doctors read this, please know how important it is to listen to your patients.  Please, never give up on them.  Please, encourage them.  And please, tell them to follow their dreams, of which there are so many.  Every person, every day, it's critical to believe, even if it all seems completely unrealistic and impossible. 

Everyone deserves the chance to dream the impossible dream, and then to chase it, full speed ahead, surrounded by nothing but encouragement.

Peace.

The MS Walk

It is that time of year again, as I am watching the snow fall and I am stuck inside, I'm asking people - you - friends, family, anyone who wants - to contribute to the MS Walk, which raises funds for the National MS Society.  The MS Society then uses these funds for research toward ending MS, toward services for people with MS, and much more.  What many people may not understand is that every donation is important - $5, $10, etc.  It all adds up!

You can sponsor me (and read my story) here:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762

(then click on "Donate to Beth")

You can also show support by joining our team "May You Dance."  Same link, just click on "Join Beth's Team."  Then you can come walk too, and hopefully by then, the snow will stop.

You can write a check (to the MS Society) - just let me know and I'll send you my address, or you can give me a check or cash...  it all works!

Why, year after year, do a bunch of us continue to participate? Everyone has their own reason.

And for me, every year is different. 

Why donate?  Because people like me are on Ampyra, a drug to help with walking, but it has turned my life upside down, in a good way.  This drug received initial funding partly through the MS Society.  I've been on it for 2.5 years now.

Why donate?  Because Ampyra can help develop leg muscles.  For me, this meant I could qualify for devices called Bioness.  These are cuffs placed under the knee.  Then there are foot sensors that go under the heel.  This combination means that when I land on my heel, the foot sensor triggers something in the cuff, which then triggers the muscles that enable my toes to lift, rather than drag.  These are new this year for me!  Before Ampyra, I could not walk well enough to qualify for them.

Why donate?  Because Bioness devices cost about $5,000 per side.  The MS Society helped me apply for grants to get these devices, and gave me a grant to help buy one of them.  Since they are $5,000 each, the MS Society made it possible for me to continue to improve my walking.  Also new this year!

Why donate?  When I switched jobs, the MS Society helped me navigate through the confusing maze of switching insurance.  It's very complicated because not all insurance plans cover the same things in the same way.  And again, this is new this year! 

As I said, each year is different.

With all the advances I have made because of Ampyra, I've found myself in a strange, confusing place.  I'll probably write about that someday soon.  I'm in a place where I'm much better, where for the first time since I was diagnosed with MS, I actually feel somewhat stable.  And this is just strange.  There's much more to this, but it's a different blog entry.  Stay tuned.

A long time ago at a group, someone said, wouldn't we all be happy if our MS progression could just be stopped, so things didn't get worse?  And I said no.  I wouldn't be happy just to have progression stop.  I wanted to get better.  I still want to continue getting better.

The only reason that will happen is if research continues.  The only way research will continue is if we keep asking for donations.  And the only way research will continue is if people continue to donate.

I told my skiing instructor recently that I could wiggle my toes for the first time this season, and then they finally weren't as cold.  I told him it's such a small thing.  He said the obvious: "Beth, many small things add up to big things."  This is true.  Each year we walk, we ask for donations, and people give donations, ..., it may seem small.  But these small things, down to small donations, add to big things.

2.5 years ago I could walk only 30 feet.  2 years ago it took me an hour to do a lap around the track.  Gradually my time improved.  2 months ago I broke 20 minutes.  Last weekend, when it wasn't snowing, I broke 16 minutes.  Small things lead to big things.

Please be a part of this.
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762

Peace.

Do you see what I see?

This past Friday night I took my daughter to McDonalds.  I had promised this as they have completely redone the restaurant and there is a new play area.

I also decided that I needed to walk into the restaurant because I hadn't walked enough that day (I thought).  We arrived at probably the worst time of day for me to walk - 5:30pm - on a Fri - when everyone else had decided, it seemed, to also go to McDonalds.  There were different groups - families, teenagers, etc.  It was loud; there was a line; it was chaotic.  Using my walker was not a good decision - when there's a bunch of noise and chaos, it somehow throws me...  I need to concentrate more, people are staring, and standing still is always difficult - it's easier to keep moving.

We got our food and found our table.  My daughter ate a bit and then went to play.  I...  sat.  I wanted to go see the new play area, but I was tired, and my Internet connection seemed to work, so I was doing a lot of that.  Note to people: rarely do I not want to do something;  rarely do I want to stay back; please try to include people with limited mobility.  But on Friday night, I just wanted to sit.

It seemed like chaos was everywhere there.  Perhaps other people notice things, but with limited mobility, sometimes I have more time to look at things and observe...  other people may do this but for me it's more forced.

There were napkins on the ground everywhere.  There was a table where milk was spilled and the people had just left it.  Tables were dirty.  And this is upper-middle class McDonalds.. Those who have stereotypes might be surprised at how messy, loud, and obnoxious this McDonalds was. People were loud - conversations, loud conversations, were in pockets throughout the restaurant.  Kids were loud.  I'm sure I have been one of "those people" who has left a complete mess and been loud - but I was now watching it.

And then I saw one man by the drinking area, and he was quietly cleaning.  That area was a complete mess as well, but he was cleaning it. Then he moved to all the napkins and the milk, while no one was paying attention.  By the time we left, the restauant was in much better condition.

What was interesting, for lack of being able to find the right word, was his demeanor of being completely calm in the midst of all this chaos, as he did his job, while no one noticed, while almost no one seemed to care, in this middle class environment, whether they were making a complete mess.  No one said thank you.  Since no one noticed the incredible mess, they were not cleaning anything, but instead adding to the mess.   And in the midst of this chaos, as I watched, was a man simply doing his job without complaining.

And so, during this season of Lent, we may stop, look, and listen.  Some of us may be forced to do this, not just during Lent.  In the middle of chaos, calm.  Somehow in that calm, seemed to be peace.  And I watched it, thinking I need to find some of that calm and peace in the middle of the chaotic world.

Perhaps the man cleaning had that sense of peace in the midst of chaos. Perhaps we can all learn from those who seem so different from us, so we can find that same

Peace.

Glimpses

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.

Peace.

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

Dance
I hope you dance

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."

Peace.

A chance

BACKGROUND:
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.

PROBLEM:
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.

SIDENOTES:
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.

A CHANCE:
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?

Peace.