RAMS speakers forum

This is a copy of the speech I gave tonight during the RAMS (Rockin' Against Multiple Sclerosis) Speakers Forum. Honestly, I think it is written better than I delivered it... :)

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Hello! My name is Emily, and I am from Kansas City. I work for Reigning Grace Counseling Center, a biblical counseling center in KC. I am working on my certification to become a biblical counselor… slowly. J  I am finding it is difficult to read a book and turn around to write a paper these days,compared to the paper writing madness of college!

In August I will hit 13years of living with a disease that everybody knows so much about, yet nobody has a clue what causes it or how to fix it. It is unpredictable. It is random. It can be vicious. It can be annoying. It has been my biggest blessing and my greatest nemesis, all at once. I will explain that more as I go.

I’ve lost count how many times I’ve stood up here in front of untold amounts of college students, grasping at straws, trying to figure out a way to explain to you what living with something like MS is like. For some of you, those of us sitting up here onthis stage are the first people you have ever seen with MS before. For others of you, you have family or friends with it—maybe one of you out there has it yourself and you’re afraid to tell anyone about it, or you’re just afraid of public speaking, which is why you’re out there, and not up here… I understand that, too. I have learned that my life is not my own, and the things that happen to me are often for the benefit of another. That’s why I’m up here, and hopefully a little bit of my story will help you understand it a little more.

You’ve heard a LOTabout MS over the last half an hour or so. Either your mind is on overload mode, or you’ve not heard a word yet because you checked out at the first “hello” and you’re thinking through your routine for Rock It. Before you get up on that stage and dance, though, I want you to think about what you’re doing as you get up there and raise money for people with a disease that doesn’t necessarily make a lot of sense to you. Every step you take on that stage, every move, every jump, every twirl or whatever you happen to do, you are doing something that I struggle with. When I twirl, gravity helps my face meet the floor in very… artistic… ways. You’re doing something that a lot of people with MS cannot do. I could do this (a little more successfully, at least… without fallingover my own two feet) when I was 18, sure—I think there are a lot of you out there who ARE 18 still! Think about it—because that’s when I was first diagnosed.

I had just graduated high school, and was packing up my life to move to Columbia and start college here at MU. Eight days before I moved, I had that inevitable meeting with this new neurologist—“You have MS” were not two words I wanted to hear, but what doyou do? You roll with the punches. I moved to Columbia. It didn’t take long for me to learn of the MS Institute, meet Deanna Harper, and try to figure out what my life would be like with MS. At first, you would never know I had anything wrong with me. I went to a support group meeting they had for people with MS at the Institute, and it slightly freaked me out. I was the youngest one there,and I didn’t have visible symptoms. All I could think was, is THIS my future? Awheelchair and sitting around, talking about all that I couldn’t do anymore? I didn’t have that in mind as my future.  I didn’t know much about what my future looked like, but I sure knew what I didn’t want it to look like. I didn’t care how those people had their own stories, and who really WANTS to live in a wheelchair, anyway? I wasn’t there to help anyone else, I was too afraid to face a very scary reality—so I didwhat I do the best, and avoided it. I went to the meetings on special occasions… but I wasn’t a support to anyone else, let me tell you!

I made it through most of college with MS. Everyone has those few funny stories of how MS screwed something up and made it hilarious(if you can’t laugh at yourself, who can you laugh at?!).  My favorite happened during a speakers forum,actually, proclaiming to everyone how hard it was to keep my thoughts straight and bear with me, because my scats were thoughtered… and that verbal truth literally was on accident. This is,truthfully, how it goes… and if I ever write a book about living with MS, that will be the title!! It explains my brain VERY well.

I didn’t graduate from MU. For some, that’s a total fail. For me… it isn’t a total fail, but a sore spot. I wish I had graduated. I really would like that dumb piece of paper to accompany all the student loan statements I get in the mail! I kept getting sick from the MS, and it was just too much. I pulled out—but I didn’t lose. My time here was one packed full of experiences I will never trade. I learned a LOT about myself, consumed my weight a few times over in coffee, lived in Memorial Union (almost literally), and most of all—I learned what it meant tohave MS and survive on a day to day basis. I look normal.  Few people understood why I was struggling with my vision, or why I would fall in such a fantastical manner in the middle of the street and just sit on the ground laughing (sometimes, that’s all you can do… ).  There were about two, three weeksout of the year where people got it—and it was right after Speakers Forum. Iwould be working away in our little coffee shop, and someone would come up andask me how I was doing, if I needed anything… I mean, how many of you are outthere, versus one of me?! You hear my life story… I would stand there confused,wondering if I had forgotten someone I had met AGAIN, when in reality, I never had met you before. That confuses anormal person; add someone who would forget her own name were it not for thenametag on her shirt, and see how confused YOU get…!  J

13 years has changed me—MS has changed me. No longer am I the teenager looking for ways to creatively forget my injection of Copaxone or writing post it notes with messages like SHOOT YOURSELF and taping them to my dorm room door in order toremember that same shot… I am no longer afraid of shots (although I still hate needles). I’m not afraid to tell people that I have multiple sclerosis. I DO get tired of explaining that no, it is not what Jerry Lewis raises money for over that labor day marathon… that’s MD, not MS… and the snide comments of the uninformed who say, “well you don’t look sick” and “well, let me tell you what you will be like in ten years…” get a little old, admittedly. You learn to answer creatively to these people, and ignore them. There isn’t much else you can do, other than throw your cup of coffee at them. Tempting, a few times…

Two years ago, I switched medicines. I went from the rigamaroll of self-inflicted torture via injections to a monthly torture of infusions. The only reason this is torture is the fact my veins are HORRIBLE thanks to the many doses of IV steroids I have had from many MS relapses, and it takes one too many sticks to start an IV.This medicine is called Tysabri—they tell me it is risky, compared to the other medicines. I’ll tell you more about that in a minute.

I went on Tysabri because the MS was progressing, and in a way I didn’t want it to! I went on social security disability three years ago. I was using a walking stick everywhere I went (I’m not old enough for a cain… unless it is really cool looking…). I was having more relapses than not. It was not a pretty time in my life. I was NOT happy about it.  I was told that whatever you are like at the 10 year mark is just about how life would be like for you… and I was rapidly approaching that 10 year mark. I was facing a life of permanent disability, losing my ability to walk, slowly losing my vision, and struggling with greater levels of fatigue and cognative problems.  None of this was good. My neuro mentioned Tysabri, and at that point, I was all for it—anything to STOP this disease from progressing! I started the infusions, wondering if it would make much of a difference. Has it helped? Well, I’m standing here in front of you,WITHOUT a walking stick. That, right there, is worth celebrating.

Let’s not stop there… Iwant to tell you about a group called the Heartland Border Walk for MS. Not only am I able to walk, but I have started walking with these people. This group sponsors a three day, fifty mile walk. They raise money, just like you are doing through RAMS, for people in the KC metro area (Kansas and Missouri), and to help fund research through a group working out of the KC area. These people remind me a LOT of the MS Institute here in Columbia. They do things for the people with MS, which impacts lives.  The first year, I rode a scooter on this walk. I mean, fifty miles… c’mon… last year, I walked almost TWENTY MILES outof the fifty. TWENTY. Without a walking stick. This…was an accomplishment for me. I am walking again this year… and I’m going for thirty miles. J Who knows… maybe fifty?!

Tysabri is risky, because it is easier to contract a disease called PML—progressive multifocal leukoencephalopathy (say that five times in a row…!). PML is a nasty disease. PML is fatal, whereas MS won’t kill you (you could die from side effects of the disease, but MS itself is not fatal). PML is a nasty little bugger I do NOT want! Basically, it is where the white matter of your brain is attacked, starts to shrink, you literally go crazy, and you die. It is very rapid, too. I started the medicine knowing the risks, thinking nothing much of it. Then they started to test people for this virus in your blood that over 50% of the population has, called JCV. JCV stands for John Cunningham virus,  named after the lucky dude who brought about this diagnosis. This means at least half of you out there has JCV. JCV by itself isn’t a big deal… until you have asuppressed immune system (like someone with MS has), and you add an immunosuppressant drug (like Tysabri)… then you’ve created a perfect storm. Perfect storm… to get PML. I found out a few months ago that yes, I do have JCV. So here comes the crisis moment… do I stay on Tysabri?

I stopped for a few months, and suffered for that choice. I spent a lot of time in prayer about this choice. I am not afraid of dying, I know where I’m going when this life is all said in done. I just don’t want to take the most painful route! I am afraid of PML. I sought a LOT of counsel—I GRILLED my doctor about this. Apparently, ALL of her patients, minus two, tested positive forJCV. So, I’m not alone.  I had my first infusion after the JCV diagnosis last week. It is working… and I’m thankful. So thankful!

MS is a challenge. I’ve learned a lot about life from challenges like this. My life is a challenge, but I’m not on this earth for a life of ease and comfort. I am here to worship my God, my Creator, who lovingly placed this challenge in my life. It isn’t one I would choose for myself, but were there another way for God to bring about the changes in my life that conform me more into His image, apart from me having MS, He would have chosen the other way. I believe everything that has happened in my life, and everything that continues to happen in my life, is purposeful and intentional. I know I have MS for a reason—it puts me up here in front of all of you, for example. It opens up doors of conversation I would NEVER get to have otherwise. I understand when someone comes up to me and says they hurt because of disease, they are depressed, they are scared—I’ve struggled with all of this, and some days I struggle more than others! I can stand up here,though, and tell you—because I’ve been there—that God has a plan, this was not on accident, and yes, He cares. This is why I started to study and learn about biblical counseling, because it offers something a diagnosis like MS does not—it reminds me of the HOPE I have because of my relationship with God. It isn’t a crutch or something to make me feel better while dealing with a chronic disease—hardly! But it gives me ultimate purpose and meaning, in spite of MS.

That’s what day to day life is like for me. It’s like an obstical course—you can either lay down, or work at it. I’m working at it. It isn’t always pretty—but it is a heck of a lot better than giving up.

Thank you!

Striving

There has been so much, lately, that I have wanted to post... little thoughts here and there, Scripture that has stood out like a frying pan smacked gracefully over the top of my noggin'... passages from books that speak to a part of my soul that only God can move... but the time is the thing that escapes me so readily.  I enjoy writing, yet I do not find myself sitting down at a computer to lay out the various preponderances that glide through my mind on a daily basis.  That would bore the general population, I would gander.

I have been writing a lot, though.  I am writing papers.  I am working as diligently as I am able to finish up this bucket list of books toward my certification as a biblical counselor.  There is an overriding theme, with each book I read, with the more knowledge I acquire--I fall so short of the mark.  Oh, to God were I able to live out all these truths I am learning about... the more thankful I become for the learning curve of life, and the readily available truth of forgiveness in Christ.  Apart from this, I am hopelessly lost in a mire of my own making!

I read a story of animal that had fallen into a well, and there was no hope of rescuing this animal.  So, with a heavy heart, the farmer began to do the most merciful thing he could think of, and end the animal's suffering.  He began to shovel dirt into the well.  My first reaction to this was to recoil in horror--of course it would be better to shoot the animal first, would it not?  Much better than suffocation, one would think.  I continued to read, though.  As they shoveled the dirt into the hole, the animal would fight through the dirt falling on its head and stamp it down to the ground; slowly but surely, the animal beat the dirt down with each shovel full and began to come up out of the hole.  With each trial of dirt thrown upon its head, the animal would struggle through it and continue to climb.  Eventually the animal was able to climb out of the hole and go about its way.  Now, had they shot the animal--it would have indeed died.  It has made me rethink my definition of mercy.  It was NOT the most merciful act, to shoot this animal--had they done so, its fate would have been sealed.  Instead, their method of execution ended up saving its life.  

It made me think.  How often do I view these trials of life that God is intentionally placing into my life as the most cruel form of punishment instead of a method of a loving God to grow me up into His likeness even more?  Had the animal stopped struggling through the dirt being thrown upon its head, it would have died.  The animal didn't give up.  Just because it is hard, it is unfair, it is upsetting, it is anger-making, it is depressing... just because life isn't what you wanted or expected it to be... doesn't mean to stop striving.  It does not mean to stop fighting.  It's what you fight for, though... that makes the difference...

Col 1:28 NASB - We proclaim Him, admonishing every man and teaching every man with all wisdom, so that we may present every man complete in Christ.
Col 1:29 NASB - For this purpose also I labor, striving according to His power, which mightily works within me.

TWO Reasons Why I Will NEVER use Christianmingle.com

1) Their commercial says, "Sometimes God is saying, it's your turn... so let us help."  GOD NEEDS MY HELP?!  ARE YOU KIDDING ME?!?!
2) They abuse Psalm 37:4... totally take it out of context to fit their purposes.  But, to their credit... a LOT of people do that.  But this is the #1 way to KEEP ME from using your services... EVER...

Are there more than two reasons?  Oh, sure.  Those are the two that make my BLOOD BOIL, though.  Do I think all online dating sites are evil, bad, horrible, no good, whatever?  No, not necessarily... sin is sin, and it is an easy avenue to pursue sin, sure... but it COULD be good, too.

I'm in the debate stage, about actually PAYING for one of these sites, giving it a shot... seeing if there's ANY guy out there with a pulse who is single and qualified for an extended conversation... HA...

and don't worry, for those friends of mine out there who might read this and go "DANGER! DANGER!  Remember LAST time?!"  Oh, I  do... and I have others involved this time.  Transparency is my friend... :)  (and, I would like to think I'm a bit wiser now...)

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."

Testing this method of posting out...

i can post a blog from my cell phone?  how sweet is that... !!

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...

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/