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."

blessings

there is a song that i have heard on the radio frequently as of late. it is a song that has a lot of meaning to me... laura story (the woman who wrote and performs this song) wrote these lyrics out when they found out her husband had cancer. each of us have unique struggles we go through and fight... i had an "in your face" reminder this weekend of how varied (and sometimes traumatizing) the struggles of this life truly can be... and how different they are for each one of us. there's this common thread, though, that links all of us, regardless of how insane and dysfunctional the problems of life may be...

thoughts of my time in Málaga

So, I am not a consistent blog writer. As a matter of fact, I suck at blogging. Back when I first started to blog... when I had a Xanga account and Facebook was non-existent... well, I wrote more. That was my outlet. Now, Facebook has taken over all forms of lengthy communication and thoughts and replaced it with short quips and random, nonsensical-isms. It is very easy to become a part of a world where you don't think deeply about things, a world where you don't take the time to sit and communicate... as a matter of fact, you don't know how to even communicate anymore, without a computer screen in front of you. A lot of people aren't even sure how to laugh apart from acronyms such as LOL and ROTFL (wow, those acronyms can get so long, too...). So we're a society of statistics. The question is... of what statistic do you want to be a part? I'm still counting my statistics and playing my coins... but blogging may just be one of them. I hope.

I've been in Málaga, Spain for a month, more or less. I've had more emotions here than I knew possible to have in one day, from anger, despair, frustration, panic, worry, you name it... to peace that surpasses all understanding, joy, laughter... in general... a harmony of grace that amazes even me. I have been trying to figure out how to summarize this experience concisely, and I'm not sure concise is even possible. A few lessons have stood out: I've learned more and more about patience, relying upon the Lord, and grace; I've learned how very vital it is to communicate clearly; I've learned how precious it is to have people standing behind you in prayer as you face days that feeeeeeeel overwhelmingly impossible. I have seen God completely revolutionize my thinking in several areas, test me in ways that I never would (or could) have imagined... overall, completely blessed me in ways that I never anticipated. A lot of the lessons I've learned here, I wouldn't have learned in the States. I HAD to be outside of my comfort zone; I had to be somewhere where the only one I could rely upon was the Lord. I have learned when things are rough--I turn to people over turning to God. A lot of people do this, instinctively... we want to HEAR reassurance, correction, guidance... we sit and pray about it, looking at the sky waiting for an airplane to appear and write directions. It doesn't work this way. God will do whatever it takes to get your attention--for me, that included dropping me off in another country where I struggle with the language and culture without another to rely upon for help. In the midst of all of that, God was not far... when I hit my personal breaking point, when I wasn't sure how to go on one more day, God provided the strength to go on... and when I hit that wall again, more strength and encouragement came my way. By the end of the second week I broke--I didn't know HOW to go about the next day, even, and just fell flat on my face. If the Lord didn't intervene at that point, I was toast. That night I was put in contact with another American missionary who helped change the entire tone of this trip for me. When I was truly at the end of my rope, God made a way of escape for me. I saw 1 Cor. 10:13 come to life, again: "No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, so that you will be able to endure it." And yes, the context of this verse is idolatry. So how does it apply in THIS situation? What amazed me the MOST those first two weeks revolved around how many little idols I had creeping around in my heart and life. Fear, even, can become an idol, take on its own life. It can dominate your thoughts, life, everything, to where all you can think about is the fear--and completely lose sight of God. I was reading about the life and ministry of Paul, and this verse jumped out at me-- 1Cr 2:3 NASB - I was with you in weakness and in fear and in much trembling,-- PAUL WAS FEARFUL?! That made me stop in my path. If Paul was fearful, then why was I surprised at how fearful I felt? The difference, though, was Paul's response to the fear... read the entire passage:

1Cr 2:1-5 NASB - And when I came to you, brethren, I did not come with superiority of speech or of wisdom, proclaiming to you the testimony of God. For I determined to know nothing among you except Jesus Christ, and Him crucified. I was with you in weakness and in fear and in much trembling, and my message and my preaching were not in persuasive words of wisdom, but in demonstration of the Spirit and of power, so that your faith would not rest on the wisdom of men, but on the power of God.

Paul never let his fear stop him from being about God's work. I allowed fear to paralyze me, for a while. Paul's faith never ceases to amaze me... and he certainly did not walk an easy road. It was quite lonely. But he was never alone. His speech was a demonstration of the Spirit of God and His power. That has been one of my greatest comforts... even when I am the most alone, I am never truly alone... and if I am speaking words of Life, the word of God, into another's life... I am to trust His word will not return void, and rest in the power of God to make His word effective in their lives. To simply be in a position to speak into another's life, even if to simply plant a seed pointing them to Jesus, is an honor I do not ever want to take for granted. Evangelism is not a burden... it is a privilege. How easy we forget this.

These past two weeks have been lessons of a different kind, for me. Instead of isolated, by myself, apart from English speakers and familiar culture, I have been staying with another American. She speaks my language; her home has all the creature comforts of American culture, including a TV with movies, in ENGLISH... it has been a wonderful time for me, to fellowship, enjoy the country, but have a place to retreat away from the stresses of another culture. It has helped me to see what daily living as a missionary in a foreign field is truly like. The absolute necessity of self motivation and innovation has left its impression on me. You don't have a boss here, telling you what to do, when to do it, how to go about it... you have to be driven to do it without another urging you along. You must have your focus about you-- know what you are here to do, and do it. I have had two tasks before me during this trip--teach an English class three days a week and input a lot of information into a database for the community center. One aspect involves interacting with people--one does not. When I look at these two sides of ministry I have had the opportunity to be a part of, I see the most impact in the data entry over teaching. In teaching, I have the chance to interact with people, but very little (if any) spiritual conversation happens. As a matter of fact, in the center, there isn't spiritual conversation. That ministry is purely to build bridges and relationships with people with the hopes of speaking into their lives outside the center. I haven't had one conversation that even mentions the name of Jesus. Has this been a waste of time? Not at all!! It is not what we picture ministry to be, in the States... in our evangelism classes at seminaries and bible colleges, it was an 'unsuccessful' contact if you did not present the gospel and lead them in a prayer to receive Jesus as their Lord and Savior. We lose the concept of building bridges, relationships. I will not be here in five days to have a conversation with someone, if the Lord gives the opportunity--others will be. Prayerfully, by my contribution in teaching a class to a bunch of kids and a few adults, another bridge was built. That, in my opinion, is a success. The data entry, however--I am able to contribute in a way that is meaningful to the workers at the center. I am able to take a project off their hands and get it going, when they do not have the time to do so. It blesses me, to be able to bless them. For this... I am exceedingly thankful.

A few weeks ago, the thought of returning here for ANY reason in ministry was ludicrous. There was NO WAY I would willingly step back into this situation willingly, for long term. Seeing things change, though, the past two weeks--has given me time to reevaluate. I don't know what the future holds... I can't say that I know for sure there is a ministry here I would want to be a part of, even. But I also cannot say that I would not come back, if the Lord leads. My life is not my own; I am a vessel in His hands to do what He wants to do with me. That may not be overseas, it may be right in Kansas City, even. But, to be a vessel, to be used... that... is an honor I can't even put into words. God will do what He wants with what is His... and I am thankful to proclaim KNOW that I am HIS, and He can do whatever He wants with me... may that be shuffling papers in an office, serving in missions, singing with the worship team at church, scrubbing toilets or anything else you can think of... none of it is for my glory. For HIS glory, and that alone... Soli Deo Gloria!