Our Daily Bread

Friday,
August 12, 2011

I like staring.  I don’t stare only at people.   Maybe it is the photographer in me.  I am always looking at everything.  I stare at the clouds, or at light playing through the leaves.  There is contemplation in a stare.  I stare at a flower.  I fix my gaze, and looking intently with my eyes wide open, I take note of everything.  As my thoughts deepen, my eyes glaze over, and I am no longer looking at the flower, but almost looking through it.  I stare, and the flower goes out of focus.  Like looking through a veil, no longer a crisp image, it becomes soft color and dappled light.  I am inside my head with thoughts that swirl all around that flower. 

Lately, I have been staring at my life.  I look at my leg, the one that has lost muscle.  It is my nemesis, my own body fighting against me.  I feel like it doesn’t belong there, not the way it is at least.  I stare at it, contemplating how to conquer it, how to gain strength and maintain health.  My answer is calf raises and stretching.  I could do 30 or 40 raises at a time on the left leg – pop, pop, pop, up strong every time - but the right leg struggles for 15 slow movements.  My left side is literally unaffected by this disease. 

I am staring at myself, staring at my life, trying to find the will to get out of the chair and attempt exercise or do a little housework.  Am I really that tired, or is this depression?  I never use that word.  No, not depression, I really don’t believe that for a second.  The possibility flits in and out of my thoughts, but, no, that is not me.  When I saw Dr. Kita, she told me that lesions in the spine tend to cause fatigue.  Is tiredness a good reason not to push?  Am I being lazy?  Just look at yourself.  Really look.  How do you feel?  This isn’t laziness.  I am weak.  Why is it that my nervous system not working affects the strength of my body to such a degree?  I guess if  my brain can’t get the message across to the leg to move properly, strengthening will be difficult.  Everyday, I try to stand on my right leg more, hoping that will help.  I do a little exercising, but I have overdone that in the past and experienced set backs, so I am tentative.  Exercise puts my nervous system on edge.  Every neuron starts firing, it is as if they are working overtime trying to get my leg to move.  Then when I am done, I am exhausted.  Is 20 minutes of exercise really going to make a difference if I need a nap afterward?  It has to help.  Right?  Right. 

There are problems with balance.  Not horrible, and some days are better than others.  Standing in line at a church pot luck the other day, I was glad my friend was there to hang onto when I suddenly lost my balance just standing there.  I needed a person or a wall for a second to regain balance.  Do I need to use that cane?  I tried it one day.  (Hated it!)  A walker would be easier for exercise.  I am way too young to use a walker.  Besides, then people will be staring at me!  But if I had one, I could take a nice walk in the neighborhood.  Wonder if they make one with bigger wheels for hiking?  Silly girl, you are not going hiking.  I like going to the grocery store.  The cart is easy to hold on to, so I can stroll slowly around without advertising my unsteady gait.  Maybe I will get a grocery cart for that walk in the neighborhood.

What is life going to look like if I can’t walk?  I know I am not there yet, but so much of life is wrapped up in our physical ability.  Even I kind of define myself by what I can accomplish.  What’s my definition without my physical ability?  What will accomplishment be for me?  Well, it won’t be yard work.  That is for sure.  Do I write?  Do some accounting?  Paint?  Photography?  Even my photography is limited by the MS.  Unless I set up a nice studio here at home….now that might be something.

Staring into my life with MS becomes a constant conversation about the what ifs, and how to overcome, and what if I can’t overcome?  The truth is, there is not a way to “overcome” MS physically, but I can have a positive, overcoming attitude, and realize that I can trust God even in this.  The difficulties I am having are more than I had anticipated at this stage, and my thoughts about it are never-ending, but I know I can’t keep staring at the leg.  I need to take my eyes off myself and focus on new possibilities, possibilities I never would have considered or explored if I were relying on my own strength.  Trusting God means moving forward, not just sitting and staring. 

“Do not fear, for I have redeemed you;
   I have summoned you by name; you are mine. 
When you pass through the waters,
   I will be with you;
and when you pass through the rivers,
   they will not sweep over you.
When you walk through the fire,
   you will not be burned;
   the flames will not set you ablaze. 
For I am the LORD your God,
   the Holy One of Israel, your Savior;                                                                                  ~Isaiah 43:1-3

When I started this blog, I had thought I would be following my progress as I fought to stay physically strong.  That process has a definite ebb and flow…  with emphasis on the ebb.  I was quick to think I could do anything in my own physical strength.  What do you do as that diminishes? 

I am losing my balance much more often.  I am wondering how cool I can look sporting a cane – even checked some out online.  It just seems that this wave of the disease is coming at me with tsunami like strength, seeking to drown me.

Oh, that is so dramatic!  Normally, I am a terminal optimist.  I hate the way I am feeling about this.

This past week, I did a regimen of steroid treatments.  Dr. Kita tells me that many people do this on a monthly or quarterly basis for the physical boost it gives them.  I have done steroids in the past for a few exacerbations with no problems at all.  This time, it really affected my sleeping.  Horrible insomnia.  I was prescribed Ambien to get rest, but it left me feeling very wiped out.  Exhausted yesterday, I gave in and took Ambien again last night, and finally got my first good night of rest in a week.  Maybe it wasn’t the Ambien that was making me feel so weak.

On a side note,  steriods give you the munchies.  I like that part of it.  I have a bag of fritos to demolish today.

Keep me in your prayers.  I will return in my next post as the indomitable, terminal optimist.  I am learning a new thing about trusting God.  He has always proven his faithfulness to me, and I know that I will find my strength in him.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  ~ Jeremiah 29:11

Then I wait patiently until they need me.  I love to fix things.  I am good at it.  (I just need some more tools, and maybe a book on wiring & plumbing).

When I started the Ampyra, I really thought it was going to be a great help to me.  Walking faster would equate to gaining strength.  If I can walk faster, I will certainly be able to walk further, right?  Or maybe not.  This past month or two, I have had increasing trouble with balance and walking.

I need to fix this. 

In thinking it through, I realized the correlation between starting Ampyra and having more trouble walking.  Yes, it is summer, and warm weather can cause MS symptoms to worsen, but we have not had a lot of hot weather.  What plays over and over in my mind is the small percentage of people who experienced relapse or balance disorder in the Ampyra trials.  Maybe that is me.  I am one of the 4- 5%.  So for now, I am going to stop taking the Ampyra.

Ampyra doesn’t do anything to slow the progression of this disease, so I think it is a good idea to just stop taking it and see if that helps.  I will let Dr. Kita know that when I see her again (soon).  Phil accuses me of thinking I know best, and of being stubborn.  Of course I do, and I am.  Usually, we have a pretty good read on our bodies, and we should think for ourselves.  I am not saying that I won’t try Ampyra again after I talk to my neurologist, but for now, I will try a few weeks without it.

I saw Dr. Kita last month and I did the same walking and coordination tests that I did back in April.  I knew the medicine had, at the very least, improved my energy levels.  When I was seated in the exam room to wait for the doctor, I was surprised at the memories that came to me from that day back in April.  In April, I walked in on weaker legs.  At that time, putting one foot in front of the other seemed like a skill that I might be in danger of losing.  The walking test was just a simple timing of my pace up and down the hallway.  The coordination test required placing pegs into holes and then removing them.  As I considered how I felt that day in April, and compared it to this day, I realized how much difference the Ampyra had made in such a short time.  I had only been on the medication for one month.  Having MS, you just don’t expect a medicine to make such an impact.  You get used to the idea that your body may fail you at some point.  In that short stretch of the walking test, I improved my time by 2 seconds (and it is a short hallway)!  I had not even known that my hand-eye coordination had been affected in April, but the time for that test improved as well.

The other thing I want to tell you, if you do try, or recommend this drug to anyone is about the side effects.   The first month, I did experience headaches and insomnia.  Getting the timing down for taking this medication twice a day helped with the insomnia.  I take the doses 11-12 hours apart, and I always take the first dose right when I wake up.  If I miss that evening dose by more than an hour, I skip it.  Sleep is important.   Also, the increased energy that I now have has gotten me up and moving more, which helps me actually be physically tired each day.  So now, I am getting even better sleep.  The headaches also went away after that first month.  Maybe they were caused by that lack of sleep!

Those first few weeks, I could swear that I felt the Ampyra coursing through my body.  I do have a vivid imagination, but I also felt physically “amped.”  That actually is what the medicine does,  it speeds up those neuron transmissions; I think I could actually feel that working.  I am Amped!  Not only physically, but in my spirit as well.

Ka-me-ha-me-HA!

In short, our neurons gather a charge and send it out to the intended target.   The MS patient has lesions or scarring in the myelin sheath which insulates the axon and nerve endings (the path on which the signal is carried).  The demyelinating areas slow and weaken the transmission.  Our nervous system initiates these transmissions in the brain and spinal cord, so the longest path the transmission has to travel is to the legs.  The farther the charge has to travel over scarred areas, the weaker it can get, and sometimes it will even fail to transmit completely.

Dr. Kita explained that Ampyra helps the neurons gather a larger charge before transmitting the signal.  That larger charge allows the signal to power through the scarred areas.

I was fascinated with the science lesson, but when she said ”gather a larger charge,”  my mind immediately went to ”Dragon Ball Z,” a cartoon I used to watch with my son.  All I could think of was the character, Goku, putting his hands together to gather his Ki power, which he is then able to release in an explosive beam of energy.  As he gathered this power, he would chant, “Ka-me-ha-me- HA!”

So that is where I am.  Gathering neuron powers to summon my legs to do as I wish, with the help of Ampyra.  I just started taking this medication on Monday.  I will keep you posted.

Ka-me-ha-me-HA!

When I found out that my insurance considered Copaxone a specialty drug, and the cost to me would be one-third the retail cost of the medicine with $5000 max out-of-pocket, I was not sure what I could do about it.  The pharmacy directed me to Shared Solutions. 

I had heard about Shared Solutions for years.  As soon as I started taking Copaxone, I began to receive literature from them.  I knew they were a support group, but I did not realize that they provided financial assistance for MS patients on Copaxone.  When I called, I was told that they process some claims right over the phone, almost instantly.  My claim required me to jump through a few more hoops - probably due to the higher dollar amount.  They sent me three or four forms to fill out, and I had to provide them with financial information, but within just a few days I was approved for assistance. My responsibility for a monthly shipment of Copaxone is $0. ZERO.   This not only pays for my medication, it actually puts $50 a month back into my pocket.

If you are someone, or know someone, who finds MS medications beyond your reach, most of the drug companies have support systems like Shared Solutions to help you.  I am starting a new drug called Ampyra.  Same deal.  Ampyra is paying what my insurance company will not.  I do have a $40 co-pay for this one.  Guess I figured out to do with the excess $50 in my budget.

When the package arrived, I opened it up and I was $hocked!  $981?!  Nine hundred and eighty-one dollars!  I am panicking.  We don’t really have a lot of extra money, and I am multiplying $981 times 12 in my head – that is like $100,000 dollars.  Ok – so my math was a little fuzzy, but it may as well be $100,000, because I will not be able to afford this medication.

I called the pharmacy.  Pharmacies do not like to take returns.  They do not want to refund money.  This $3000 dollar (retail) package of medicine will have to be destroyed if I return it.  I told them that I was fine with that.  I quickly taped the box back up and determined that even if they would not authorize a return, they were getting this back and I was cancelling the payment.  I really wanted this out of my house.  Now.  A little worked up and worried, I called the credit card company to ask how to stop payment. 

For three days, I stewed.  I had never authorized $981.  I wouldn’t.  The pharmacy was reviewing their phone records and, of course, in the end, they arranged for Fed Ex to pick up the package and credited the $981.

Now I am without my Copaxone.  A medicine that I have taken for 10 years.  I am always the optimist, so I figure that it will work out eventually, or I will be fine with it not working out.  Not giving myself a shot every day will be nice for a change.  For the person with MS, not taking your medication does not affect you like it would for someone with diabetes.  The missed doses will not even be noticed.  MS medications are at work for long-term results, slowing the progress of the disease.

The pharmacy was very nice about all of this…and they had no leg to stand on, because no one had said to me your bill will be $981.  They did point me in the right direction for assistance.  Shared Solutions helps patients taking Copaxone stay on treatment when there are limited finances or a lack of insurance.  Within just a couple of days, I was approved for coverage.  My order is in place.  It should be here soon.

I allowed two whole days for the ankle to heal, then I got back to business.  Not exercising, mind you, but I figured I could at least accomplish my everyday errands and commitments.  A day or three of that, and the ankle was telling me that it meant business.  This was no ordinary sprain…or, I am no longer immortal. 

Now, two weeks later, walking is not too bad.   The stairs are the worst, and still being taken just one at a time.  My hubby made sure it was iced it all weekend, and he picked up a brace for me.  Those things have helped tremendously.

Here’s the deal.  There will always be set backs.  There will always be days when we don’t get to the exercise that we intended.  You gotta get back on that horse.

I started this blog to track my progress and to hold myself accountable in a tangible way.  I am also hopeful that this will encourage others with MS to stay strong and healthy.  So, I am getting back on that horse.

I feel a bit behind the eight ball, as I have been inactive for far too long.  There is so much work to be done, but I want to see results.  I want to feel strong.  Exercise is going to be key in keeping myself healthy as I continue on this journey.  I believe that with all my heart.

In an effort to take it slow, I did very simple work outs and did not push too hard.  Even in taking it somewhat easy, I do have sore muscles.    Just sore enough to let me know that I did target specific areas.  It’s that “good” sore.  Many times in the past, I have overdone it when I started a new exercise routine.  Having MS, there is already an issue with fatigue.  Working out strenuously can wipe me out for a few days.  So far, so good.

I am encouraged!  I needed this goal, this physical challenge.  So many of you have voiced your support.  I am bolstered by prayer, and by the love of many.  You all bless me.

I am looking forward to doing a little more walking this week.  Just short walks.  Maybe at the mall…with shopping breaks.