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Archive for the ‘Blessings’ Category

Note: I wrote this blog nearly a month ago and am just now getting around to posting it because a good friend has been asking for it for ages and I thought she could use a small pick-me-up. This one’s for you, Liz…

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Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

This winter has been one full of challenges, stresses, adaptation, loss, learning, sickness, and love. Yes, love. Without it, I’m not sure I would’ve come out as relatively unscathed on this end.

This winter, New England received more snow than it had in years. It was blizzard after blizzard. It was cold and unrelenting. Even worse, my body appeared to be taking lessons.

One thing that I’ve always prided myself on is being able to rise from just about anything and everything stronger and smiling. After December, I was petering on the edge, still smiling, but straining and struggling not to lose myself. But after the second month of medical hell, I wasn’t sure that I wasn’t going to rise.

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Once you choose hope, anything’s possible. -Christopher Reeve

Four months ago I got my muscle biopsy results. It showed severe deficiencies and came with the official diagnosis of Mitochondrial Disease. Although I had lived over a year with a “clinical diagnosis,” it had suddenly become real. Really real. I found myself at a crossroad: I could breakdown and cry; or, I could do something about it.

That night I spoke with my best friend and expressed how I felt. Less than a year earlier, she had had the same conversation with her physicians. She heard those same words: “You have mitochondrial disease.” She felt the reality come over herself. And she chose to fight back.

We spoke for a long time about what we could do. How we could change the future. How we could keep this horrible disease from consuming our every wish and dream. Our every hope.

It was on that night that the Show of Hope was first conceived.

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When it rains, it pours.

It often seems like all the bad stuff gets clumped together in one big barrage of awfulness. This hospital stay is surely no exception.

First, we’ve dealt with a few episodes of dystonic storms. These are often triggered for me by exhaustion, physical pain, and exertion. When these three things are combined, the storms are worse. Dystonia is a movement disorder that causes involuntary movement and posturing of different muscle groups. I’ve suffered from dystonia in my left side for about 9 years. Recently, the storms have caused me to have bilateral leg involvement. It’s painful and the treatment often given cannot be used on me due to the underlying mitochondrial disorder. In short, it sucks.

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Ten years ago today, I began dating the boy who would become the man who would become my husband, my hero, my best friend.

Through all the craziness in the past ten years – whether it be medical, family-related, loss, or growing pains – there has been one constant.  Keith.  He has been firmly placed by my side through it all.  I still don’t know what other high school Junior would choose to go bravely, unfaltering, even happily along side all this, but I’m glad I found the one who would.

I had asked him why a few months ago.  Why would a teenager choose this?  He took a while to answer, but his response was the unbearable guilt he would have felt.  My first thought was guilt?!?  He stayed with me because he would have felt guilty if he hadn’t?  No, he explained.  I would have felt guilt for the rest of my life for leaving someone I loved to go through it all alone.

Keith is a child in a grown man’s body.  He likes playing video games, wearing screen tee’s and jeans, and eating Fruity Pebbles for breakfast, lunch, and dinner.  He can’t balance the books, doesn’t know how to use a calender, and has to play 20 Questions just to send a check off.  And yet, he possesses more maturity than almost any other man I know.  He was unhesitatingly there when I spent months bed-bound and home-schooled as a teenager.  He didn’t have a second thought about taking a girl in a wheelchair to Senior Prom.  He only worried about my experience for nearly 5 years of a long-distance relationship while we were in undergrad.  He calmly and compassionately cared for me when I was having seizures daily, episodes that were messy and scary.  And he confidently held my hand as we listened to the doctor’s tell us that I had a progressive and incurable neuromuscular disease.  He’s always there.

I found out recently that not everyone considers his or her spouse as a “best friend.” This shocked me. It makes me incredibly sad. Sure, there’s still love and loyalty that keep those relationships together (as far as I know), but I can’t imagine not having my best friend there with me through it all. I don’t know whether we could have made it through those difficult times without our friendship. Love and loyalty can only get you so far; being able to enjoy and share our time together has made all the difference. We can play board games one-on-one until the pieces wear out. We can goof and giggle through 10-hour road trips. We can talk until 3 am. Or just sit and be. Silently. It doesn’t matter what we do or where we are as long as we’re together.

Weeks before we married nearly 3 years ago, a friend joked that we had already done the whole “for better or for worse, for richer or for poorer, in sickness and in health” deal. And we had. Well, we had done the “for poorer” and “in sickness” parts, at least. So I wonder, would things even out and be for worse if we had health and riches? Because right now, things are so good and so strong between us that I can’t imagine a “better.” I honestly can’t imagine being happier. I can’t imagine a life without him.

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[This is the fourth and final part of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Phew! Ladies and gentlemen, we’ve made it through the world of tubies! I gave you an update on my own situation, a small glossary of terms commonly used in the tubie world, and an overview on types of tubies (and the corresponding who, what, where, when, and why of each). And now I’m to the most important part: the impact. The “so what?” So how is life with a tubie different? Well, everything is different, but nothing has really changed. Confusing? Obviously, as a person, I haven’t changed, but how I interact with the world has. Some days that change seems insurmountable, but on other days, it doesn’t make a dent. Most days, however, it’s somewhere in between.

I know I’m not the only one who feels like this. And maybe it changes, becomes less (or possibly more?) difficult as the years pass. I don’t know. I’m not there yet. But I do know that the good that comes with it (at least in my case) far outweighs the bad.

Because this series has been full of my words (and I know listening to the same person drone on can get old), I wanted to share the words of my friends who have been so helpful with this process. I asked them what they want people to know about feeding tubes and the people who have them.  Here are some of the responses:

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I’m home and adjusting. After two hospital stays adding up to 40 days out of the last 46, I’m experiencing some major culture shock. It’s weird being able to do what I want when I want. And ironically, I’m even struggling to adjust to sleeping through the night without a vitals check every 2 hours. Nevertheless, I’m happy to be home.

It hasn’t been easy between 16-20 hour sleep days and multiple syncopal episodes each day due to worsening dysautonomia, but I’m learning to adjust to my new “normal.” We know it will take time, but I can’t say I haven’t been frustrated.

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In the last month and a half, I have spent 40 days and 40 nights in the confines of Mass General. While I’m not yet home from this ordeal, I can confidently say that a plan is in way if they decide not to discharge me today. (The paperwork has already been started, but you never quite know…) I will be honest with all of you and say that my spirit (which I once though to be unbreakable) was starting to crack. But my dear sister Stefani would not let that happen. She and Beast devised a plan to break me out of this brig if my medical team was still holding me hostage.

Note: The captions are Stefani’s original captions.

My sidekick - waiting to rescue his princess (True)

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