The Blog Post I Never Thought I’d Have to Write

Posted By MissyFoy

Tuesday, November 25, 2014

I’ll start out with something on the upside: I got my first ever pair of LuluLemon running capris and although Bob thought the large side pockets were ideal for a phone, I was thrilled that I could fit an entire honey bun in the pocket!  The response from one friend of mine to my excitement over the honeybun, “words fail me.”

OLYMPUS DIGITAL CAMERA

But, on to the purpose of this post …

 

So, yeah, just like the title says, this is the post that I never, ever thought I would have to write. This is the one that seemed like a complete impossibility … during all those years when I was racing the pro road circuit, going to Olympic Marathon Trials, running on a national women’s team that twice took the 5K road title, going to so many National Championships I can’t even remember how many, winning a silver medal at the 50 Mile National Championships, getting national and even world rankings, making a living as a runner, doing the job that my husband always called “the big scam” because it was so wonderful that it was hard to imagine it was really a job … during all of that, I never once imagined that I would be writing a post like this.

 

I have been diagnosed with a progressive, incurable, neurological disease.  It has been developing over the past several years, very insidiously, leading to a series of misdiagnoses.  It is part of this damned auto-immune problem that is killing my body from the inside out.  And, now I have developed antibodies to a neuromuscular transmitter called GAD (a chemical that makes the nerves in my muscles work correctly).  Its long name is glutamic acid decarboxylase.  GAD becomes split into two molecules, glutamate (which becomes part of the metabolic process inside cells, remember high school biology: the Krebs Cycle) and GABA (which makes motor neurons, or nerves that control muscle cells, stop firing once their job is done; it’s the “okay, stop now” chemical).  When GAD is attacked and damaged, I don’t have enough GABA in my system to make my all of my motor neurons stop firing, so then some of my muscles “lock up” or, worse, they spasm and contract so hard that they can tear the ligament off the bone.

 

My renegade immune cells have somehow decided that GAD is a foreign invader.  At times they begin an assault so furious that it affects my ability to run and even my ability to walk very well.  It can also cause very painful episodes, ones that have brought me to my knees and taken my breath away, ones that have resulted in Bob finding me on my knees at 3:00am tapping my forehead against the wall and crying because nothing was strong enough to kill the pain.  That one ended with a trip to the ER and IV pain meds.

 

I don’t really know what the prognosis is at this point.  I seem to be responding to the pharmacological cocktail that I am on now.  I have brought the concept of polypharmacy to a whole new level!  Some people with this condition do not respond well to any type of medication combination, but thankfully I seem to be responding to the mixture of medicines they have me on for now.

 

I have had periods when I started to feel like my body was completely falling apart … and it is devastating.  I can’t even begin to explain how difficult it has been.  But, then, when I finally start a few weeks of upswing, and I reach a period where everything seems so close to normal, I can almost convince myself that this is just some big mistake and there is something as simple as a vitamin deficiency that they have missed, that it will never, never come back.

 

Even though it remains episodic at this point, it never goes away completely between episodes.  It improves enough sometimes that I go out during the good periods and run 50 kilometers and I feel so close to normal that I kneel down and kiss the ground and cry when I finish running … really.

 

And, then, time marches forward, and I feel it starting all over again … and a panic sets in.  I try everything:  I pretend I don’t notice it, I tell myself that I’m imagining it, I try to force myself to do as much physical activity as I can, like I’m trying to prove my fitness and strength and normalcy ….  Then it gets bad enough that I can’t pretend it away anymore.

 

A few weeks ago, sitting in the clinic, I asked my doctor, “What is wrong with me?”  I begged him, “Please, just fix me.”  He pulled his chair right up to me, with our knees touching, until we were almost chin to chin, and he told me that we had to have “that” serious discussion, “I hear you, I do, I really do, I hear you when you say fix me, I feel for you, I empathize, but this is not fixable, it is not going away, and it’s not going to get better.”  On some level I already knew that.  But, it was like a knife went straight through my husband’s back.  I could almost physically feel his pain.  His breath slipped away and it looked like he couldn’t swallow.  I watched him, but he couldn’t even look up.

 

This is not where I expected to be at this point in my life.  I feel cheated, yes, I do.  I am watching my body become addicted to a regimen of narcotics and anticonvulsants, to corticosteroids, to immune-modulators.  I pray that these planned addictions will stop this disease in its tracks.  But, I have also started to make a bucket list.  And, interestingly, as much as I expected this to make me become very self-centered and self-absorbed, I am finding exactly the opposite.  I think all of us have a deep sense of compassion for others, but it somehow gets lost in the shuffle of life … until everything is upended.  Then, surprisingly, you re-find it.  Somehow, in the midst of that adversity, you find a deep understanding and compassion for others again.

 

So, as I already said, I do not know what the prognosis will be for me.  I hope that the years, the decades, of hard training that I’ve put in will help me stay mobile and independent.  I am afraid of the episodes that make it feel like my brain has forgotten how to put one foot in front of the other without having to expend an enormous amount of energy and concentration to make it happen.  I am afraid of the horrible, intractable episodes of pain that have occurred a few times already.  I am afraid of the times when I feel like a burden on everyone.  I am afraid of the depression and anxiety that all of this has visited upon me, and upon Bob as well.

 

That day in clinic a few weeks ago, my doctor tried to lighten up the mood.  After all of the complex tests, labs, MRIs, CT scans, X-rays, EMGs, NCSs, medical consults, etc., etc., etc., he said that I am structurally the healthiest patient he’s ever seen – my spine is nearly perfect, my bone density is unchanged since my very first bone scan at the Olympic Trials center in 1999, I have no evidence of any type of malignancy or tumor or leukemia or myeloma, I don’t have MS or ALS or lupus or rheumatoid arthritis or arthritis of any kind, no evidence of old stress fractures anywhere, my blood chemistries are perfect, my A1c is still 6.2 even with all of the prednisone ….  “You’re the healthiest sick person I know.”  Yeah, of course, that would be me.

 

I have been surprised by how hard it has been for me to reach the point that I am ready to tell people about this.  In part, the difficulty stems from the horrible validation that comes with saying it aloud.  In part, there is a sense of embarrassment, regardless of whether that is right or wrong.  In part, it is because I just don’t know what to say.  Now I can actually talk about it quite matter-of-factly, though, even very dispassionately at times.  I think I have cried out all the tears I have for it.  The tears I have now are usually either tears of frustration or tears of fear when I feel the downhill slide coming on once again.

 

And, then, just when I get frustrated, have a mental meltdown, and cry and yell at Bob that he doesn’t understand because it’s not ruining his life, the cat comes tearing through the house with a two foot long ribbon hanging out of her butt, the ribbon twirling in the air behind her, making her alternate between running faster, scooching her butt on the floor, or turning in panicked circles.  Yeah, life just keeps going along, doesn’t it?

 

Happy Trails, really, happy happy trails!

 

Missy

Nov 25th, 2014

26 Comments to 'The Blog Post I Never Thought I’d Have to Write'

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  1. Maureen said,

    I’m wordless, nothing I can say will make it all go away, Please know that you are in my thoughts.

  2. Laurie said,

    Love you, my friend.

  3. Amy said,

    Thanks for being strong enough and for trusting us enough to share.

  4. Allie said,

    Love you and continue to be in awe of you.

  5. Susan said,

    Such grace, Missy, even in the face of everything you have gone through and the unpredictability of the future. Hugs and prayers.

  6. Teresa said,

    {{{{{Gentle Hugs}}}}} and lots of prayers for comfort and healing to you and your family.

  7. Creigh Kelley said,

    Missy, you are a remarkable writer and, as Jeff Darman noted, an amazing individual. You are a fighter. Frankly, you’re already a champion for others. Bless you and may a miracle occur in your life.

  8. Dan McSwiggan said,

    I’ve read all that you’ve written here. You are one of my heroes. I wish you well. I know that you will be

  9. Marc Scagnelli said,

    Missy, I love you so much! You have always been someone who deals with adversity with the attitude of, OK this is happening, how do I move forward and find the positive path. I’m not a church goer but I sure do believe in God. I don’t understand why this kind of thing happens anymore than anyone else has ever tried to understand it. The fact that this is happening to you and Bob is so hard, and I wish it was not this way. But for whatever reason this is going to be part of your journey. I hope that as you go through this, you continue to feel that deep understanding and compassion for others that has always been part of who your soul is.
    It sounds like a cliche, but life is really very fleeting. Just think back 20 or 30 years ago and it really doesn’t seem that long ago at all. But then the idea of 20 or 30 years in the future seems so far away. We are only here for a while and it’s how we interact with each other and try to learn and grow from all of our experiences while we’re here that matters. I know that as difficult as this is for you and Bob, that you both will find grace and love in unexpected ways.
    I know that I and all your friends will be there for you for emotional support and to help out in practical, tangible ways as well when you need us. Do not hesitate to reach out to all of us. That is our part to play and our chance to experience grace and love in unexpected ways.
    In the mean time, we are all here, today, now, and life is wonderful and meant to be appreciated. I love you very much! I’m sending thoughts and prayers of healing and peace for you and Bob and for all of us.
    Happy Thanksgiving, and lots of love, Marco

  10. MissyFoy said,

    Oh Marco! Our fam from back in the day! Man, we were everything to each other all of us weren’t we?! What a whirlwind it all was … and I don’t regret a bit of it! Okay, well, maybe a few things that I won’t mention here. Well, like you said at lunch the other day, it’s forward from here. Happy TDay and much love right backatcha! Missy

  11. Kevin Tewksbury said,

    Missy, As I I sat here and read your blog, letting the words wash over me, I began to remember the days of old. Reading your words reminded me so much of who you are and who I remember. I remember you as the most compassionate, caring, strong and full of life a person I had ever met. I know that no matter what, you will never give up on fighting any battle and come out on the other side an even stronger and loving person. With Thanksgiving upon us and after reading this blog, I realize that I am thankful for the people I have known in my life and having known you (although we haven’t spoken in many years) gives life meaning. You keep fighting the fight and never ever give up! My thoughts and prayers are with you!! –Kevin

  12. Oh my gosh, Missy, I’m so sorry to hear this.

    You have done so much for so many, and have paved the way for countless people who follow in your remarkable footsteps. A true hero in every sense of the word.

    Of course, none of us can understand what you’re going through. But we can do anything and everything you (and Bob, and any of the rest of your close supporters) need to keep supporting you as best they can.

    We have leaned on you for so many years, Missy. Now it is your turn to lean on us and let us help you – even though nobody really knows what that means right now.

    You have faced so many challenges in your story so far. The strength, courage, and determination that makes you who you are will continue to serve you well and carry you through this. Perhaps much more than you even know.

    Sending you much love and support, Missy. Thank you for being brave enough to open up to us about this.

  13. Man, I am so overwhelmed for you but you have my prayers.

  14. This is such a moving story and in a major way so inspirational to everyone who reads it. Thanks for sharing your life. Keep fighting. You are the real deal diabetes hero!

  15. Melissa said,

    Missy, I’m so sorry that you’re up against this. It isn’t fair and doesn’t make sense, and yet this is where you are. We in the DOC will always be here for you to lighten your load where we can – the small ways that say “you’re heard, you matter, we get it.” You will not go through this without an incredible support system to lift you up.

  16. Rich the Diabetic said,

    Love and strength to you Missy. Stay strong.

  17. Sue said,

    My thoughts and prayers are with you!

  18. Scott J said,

    Unbeleivable. Sorry to hear and please stay strong. Hope they find a cure or a better prognosis .

  19. Cherise said,

    My thoughts and prayers are with you.

  20. Pointed to your amazing post from other DOC friends. Your openness and courage are inspiring. God bless you.

  21. MissyFoy said,

    Oh man, Tewks, I miss our crew so much. We were just like everything to each other! I can’t remember how many nights we spent the entire night figuring out all the problems of the world and the next day figuring that we really just didn’t know shit. It’s funny the things I remember from those years: Latham’s parachute pants, Tony and Randy’s carpet tiles on the entire walls, Marco and Lee’s sound system, Natalie breaking her nose when Wanda and I dropped her, Tony and John driving up to see us and losing their tire on I85 somewhere and not even realizing it, NY pizza ….

    I will be okay. It’s just another hurdle in this whole auto-immune thing that I got nailed with. It’s not the end of the world, right? I’m doing okay. It’s not what I want to deal with, but I have a happy little cat snuggled in my lap as I write this and good music on in the background (of course, there HAS to be good music involved), and I have so many people in my life who are just the best!

  22. Leonard Auter said,

    sending you some healing love

  23. Douglas said,

    Big Hugs from MN. I can’t imagine what you’re going through even though you’ve painted a good picture.

  24. Thanks for sharing your story, Missy. Thanks for your strength and courage. You are in my thoughts and prayers. Keep the good music flowing!

  25. John Murley said,

    Run or walk free when you can. Always remember to run or walk the mile you are in, no one else’s. The true treasure of the run/ walk isn’t the run or walk itself, but the harmony with your surroundings.

  26. Tony C said,

    I remember those days well also! I remember you and I sitting up an entire night just talking about anything and everything. You have always been a great friend and a great person! Nothing like a kitty in the lap to make you feel better!

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