my thoughts on Tysabri and PML... and what God is doing with His child

today has been a day for thinking... for praying... and a day to count my blessings.  I sure do have a lot of them.

As most of you know, I was diagnosed with Multiple Sclerosis in 1999 at the ripe 'ole age of 18.  My first round of IV steroids (the usual treatment for an MS exacerbation, or relapse) was the day after I graduated high school; I was diagnosed 8 days before I moved to a new city to attend a huge college with few acquaintances and even fewer friends (and yes, some of those acquaintances became life long friends!).  I've had my up's and down's with MS over the past 12 years.  In late 2008 (or so) I went on disability.  I was having a hard time walking; I continued to relapse, one episode after another.  After I continued to progress, the decision was made to switch my treatment from one of the disease modifying drugs (DMD's) [a shot you take anywhere from every day to once a week, depending upon the shot...] to a more aggressive treatment in the form of a monthly infusion called Tysabri.

I knew the risks.  Tysabri is a high risk medicine.  You can contract a brain disease from this drug, and oftentimes it is fatal... not always, but it has a pretty good track record for fatality.  Why on earth would I choose this medicine?!  At the time I was co-leading a support group, and my co-leaders were two people who were patient advocates for Tysabri/Biogen Idec.  I know all about advocacy... they push a drug, right?  Not always with MS... anybody who has been on these meds for long will tell you to find the one that works for you and stick with it.  What works for me may not work for you!  I liked the idea of the monthly infusion, but I wasn't sure if the risk outweighed the benefit.  And then I took one of my co-leaders, Ryan, into consideration.

Ryan struggled greatly with walking as a result of MS.  From what I understand, he had lost most of his mobility.  He was on Tysabri.  He never used a cane; he walked slower, sure... but he was WALKING.  That stands out to someone who struggles to walk... and there he was, up and going, little to no assistance.  I remember being amazed at this.  I continuously looked at my walking stick I had to use to get around, knowing that some day I would have to trade that in for a cane... and at the rate things were going, arm crutches were next.  I was getting weaker, not stronger; I was progressing, not remaining stable.

I switched to Tysabri in November 2009.

People look at me today and tell me they would have no clue that I have multiple sclerosis.  I just smile.  If you had seen me a year and a half ago, you would have realized there was something wrong, simply by how I walked.  Within six months of starting the Tysabri... I no longer needed the walking stick.  Today, I walk unaided (most days... some days gravity sneaks in and reminds me I am not invincible, but we tend to have an agreement for me to be mobile while in public, and when at home I can fall more often... somehow, this thought entertains me and makes me feeeeeel better about the fact I'm a total klutz!).  I am doing SO well with this treatment plan switch, I have been thankful for it.  The risk has completely outweighed the benefit.

I had my monthly infusion Monday of this week.  The infusion itself went fine, once they got the IV started (I'm a hard stick for an IV to start... ask the nurses at the hospital, I think they think I do this on purpose, to see how many of them I can go through before someone actually gets the thing in right...!).  After I left my infusion I had a strange reaction to the medicine that lasted a few hours (easy explanation was that I had a case of extreme confusion for a while).  I called my doctor to ask about this recent change (which happened literally within 20 minutes of the infusion).  She said it was something she had never heard of before, but as a precaution--let's run an MRI to make sure there isn't something going on.

I had the MRI (Thursday) in the morning.  I still do not have the results.

Now, this makes me think a lot.  It is easy to start playing the "what if" game.. "what if" I have this brain disease?  It is called PML... that is short for progressive multifocal leukoencephalopathy.  It's a lot like MS in that it destroys the meylin around your nerves and is degenerative.  The difference is that this disease tends to be fatal.  That certainly can put a cramp in your lifestyle!

At one point I was upset--all I could think was, I don't want to die yet... there's so much I've not had the chance to experience... things I want to do, things I want to be... I'm only 30 for goodness sake, there's so much life left to live!

Then I thought of the worse case scenario.  I die.  Where do I go when I die?  I go Home.  I get to see my Lord, face to face... wait, that's my worst case scenario?  I get to see Jesus?  Now, how is this bad?

It didn't take me long to see how much I was focusing on me me me... and the here and now.  I say I make every effort to hold onto things loosely in this life... this is not my life to live, it is His.  I realized in a hurry that my grip on "my life" was getting too tight, because the thought of leaving all this saddened me.  I wasn't initially excited about the thought of standing before my God... I was thinking of everyone I would leave behind.  What I found myself doing was grabbing fists full of a substance like sand, thinking somehow I can hold onto it and keep life ordered the way I think it should go... when in reality, the sand is slipping out between my fingers faster than I realize.  It's futile.  And what I'm left with in the palms of my hand becomes so mangled by the pressure with which I'm clenching my fists... there's nothing there left to hold onto.  I'm left with a fist full of air, hands clenched, full of... me.  Sinful me.

I know and believe God will do what He wants with those who are His... I am His... therefore I rest in His arms.  Have I been trusting in God, in this circumstance?   Do I believe God has my good in mind, for His glory?  Do I believe God is aware?  Do I believe God has a plan?  Do I believe God is in charge?  This little dunk in the ice bath has been another test of my theology... what do I truly believe, and when all else is stripped away, to whom or what do I cling?  Do I try to cling to my friends to pull me through?  Do I expect family to be there and keep me together?  My church?  No... because in the end, none of these people stand before God with me.  Yes, all of these support me. I am so incredibly blessed by the people who surround me and pray for me, pray with me.  I couldn't ask for more than what the Lord has blessed me with, in these people.  My family is unwavering, when it comes to something like this... I know IF (and that is a mighty big if!) I am diagnosed with something such as PML, they will stand beside me and do whatever they can to help.  I'm thankful for my family, biological and spiritual.  I'm above blessed.

This isn't about me being fatalistic, thinking I have some big bad brain disease and I'm dying.  Odds are, I'm perfectly fine.  I do not know what tomorrow holds--and I am simply a piece of clay on the Potter's wheel, being made more and more into His image.  Sometimes the Potter will smash the clay on the wheel to get out a defect, and start the molding process again.  It can be painful, but the end product... the finished work in the hands of the Potter... is breath taking.  What right DOES the clay have to tell the potter to do with it?

What this has taught me--reminded me--again and again is how short this life is... how much time I waste on pursuing things that don't matter in the end... relationships I neglect to build with friends at church because I'm "too busy" or "too broke" or "too..." whatever... to get involved with others... life IS short.  This is the only one I've got to live, for His glory... until the next one to come, of course... but when people look at me and learn that I have health problems, what do they see?  Do they see an individual full of fear and anxiety, crying about how she doesn't want to die?  Or do they see someone clinging to Jesus with every ounce of her being, trusting Him for each breath she takes?  PML or no... I want to be the later on this list.  I want to be one who is known for holding on to Christ above all else, desiring to worship Him and give Him glory, regardless of the personal 'sacrifices' that may try to distract.  I want to be so singularly minded, my first response and last response to any situation is "how will this honor and glorify my Lord?"

PML isn't an end... it's a beginning.  Every day is a beginning--a new day to order my life around the Word of God; a new day to seek Him, enjoy Him, glorify Him, worship Him.  I'm given this opportunity every single moment that I inhale air.  I don't want to take the moments I take a breath for granted... I want all of my life to be lived for His glory alone.  Because, in the end... it's those moments that I have to give back to my Lord. How have I spent them?  Am I making the dash between the dates count for His glory, or my own?

This is what the thought of PML teaches me.  Make the dash count... not for my glory, but His alone.  He knows what He is doing... in this truth, I rest.


Isa 26:3 NASB - "The steadfast of mind You will keep in perfect peace, Because he trusts in You."
Isa 26:4 NASB - "Trust in the LORD forever, For in GOD the LORD, we have an everlasting Rock."

Heartland Border Walk for Multiple Sclerosis

So, it has been a week since the Heartland Border Walk for Multiple Sclerosis started (a three day event where we crazy ones attempt to walk fifty miles). I walked with a whole lotta people who actually walked the whole FIFTY MILES! I am so proud of all of these people... they literally walk their butts off for friends, family, and total strangers with multiple sclerosis. While I can say some of us started off the weekend as total strangers, we pretty much all left as friends... how can you not, after going through something like this together?!

Personally, I made it 14 miles or so on foot. I did ride a scooter for some of it, which helped tremendously to just sit down for a mile or so before walking again. I was able to share the scooter with a friend, Mindi... otherwise I would have had to have ridden the scooter the rest of the time when I DID want to still walk some. It worked out great!

I'm already registered for the 2012 walk. I can't wait!! My goal for next year? Walk 25 miles... think I can do it?? :) Why don't you come walk with me and find out??

http://www.msborderwalk.org/

One Finger for His Glory

I read this chapter today in a book by Corrie ten Boom, Tramp for the Lord. This chapter spoke VOLUMES to me because the lady she writes of had multiple sclerosis. Oh, to be as faithful as this woman, in spite of an illness I cannot control....

And there came a certain poor widow, and she threw in two mites… And [he] saith unto them, Verily I say unto you, That this poor widow hath cast more in, than all they which have cast into the treasury: For all they did cast in of their abundance; but she of her want did cast in all that she had, even all her living.
Mark 12:42-44

“One Finger for His Glory”

We arrived at her apartment by night in order to escape detection. We were in Russia (in the region of Lithuania, on the Baltic Sea). Ellen and I had climbed the steep stairs, coming through a small back door into the one-room apartment. It was jammed with furniture, evidence that the old couple had once lived in a much larger and much finer house.

The old woman was lying on a small sofa, propped up by pillows. Her body was bent and twisted almost beyond recognition by the dread disease of multiple sclerosis. Her aged husband spent all his time caring for her since she was unable to move off the sofa.

I walked across the room and kissed her wrinkled cheek. She tried to look up but the muscles I her neck were atrophied so she could only roll her eyes upward and smile. She raised her right hand, slowly, in jerks. IT was the only part of her body she could control and with her gnarled and deformed knuckles she caressed my face. I reached over and kissed the index finger of that hand, for it was with this one finger that she had so long glorified God.

Beside her couch was a vintage typewriter. Each morning her faithful husband would rise, praising the Lord. After caring for his wife’s needs and feeding her a simple breakfast, he would prop her into a sitting position on the couch, placing pillows all around her so she wouldn’t topple over. Then he would move that ancient black typewriter in front of her on a small table. From an old cupboard he would remove a stack of cheap yellow paper. Then, with that blessed one finger, she would begin to type.

All day and far into the night she would type. She translated Christian books into Russian, Latvian, and the language of her people. Always using just that one finger—peck… peck… peck—she typed out the pages. Portions of the Bible, the books of Billy Graham, Watchman Nee, and Corrie ten Boom—all came from her typewriter. That was why I was there—to thank her.

She was hungry to hear news about these men of God she had never met, yet whose books she had so faithfully translated. We talked about Watchman Nee, who was then in a prison in China, and I told her all I knew of his life and ministry. I also told her of the wonderful ministry of Billy Graham and of the many people who were giving their lives to the Lord.

“Not only does she translate their books,” her husband said as he hovered close by during our conversation, “but she prays for these men every day while she types. Sometimes it takes a long time for her finger to hit the key, or for her to get the paper in the machine, but all the time she is praying for those whose books she is working on.”

I looked at her wasted form on the sofa, her head pulled down and her feet curled back under her body. “Oh, Lord, why don’t You heal her?” I cried inwardly.

Her husband, sensing my anguish of soul, gave the answer. “God has a purpose in her sickness. Every other Christian in the city is watched by the secret police. But because she has been sick so long, no one ever looks in on her. They leave us alone and she is the only person in all the city who can type quietly, undetected by the police.”

I looked around at the tiny room, so jammed full of furniture from better days. In one corner was the kitchen. Beside the cupboard was her husband’s “office,” a battered desk where he sorted the pages that came from her typewriter to pass them on to the Christians. I thought of Jesus sitting over against the treasury, and my heart leaped for joy as I heard Jesus bless this sick old woman who, like the widow, had given all she had.

What a warrior!

When she enters the beautiful city
And the saved all around her appear,
Many people around will tell her:
It was you that invited me here.
--Author Unknown

Ellen and I returned to Holland where we were able to obtain a new typewriter and have it shipped to her. Now she could make carbon copies of her translations.

Today we got a letter from her husband. In the early morning hours last week she left to be with the Lord. But, he said, she had worked up until midnight that same night, typing with that one finger to the glory of God.