Saturday, April 18, 2009

I have MS but MS does NOT have me

Today is a really weird anniversary of sorts in France. On this day exactly 5 years ago, my left foot and leg started tingling. As soon as I noticed it, which, by the way, I can remember the exact time(! 3:30 p.m.), I. FREAKED. OUT. I knew what it was.
See, my family has a history with this crap disease. My mom has it. Her mom had it. Now I was starting to show symptoms. Later in the evening I started to feel dizzy.
I went to the Dr. at urgent care the next day and they told me that dizziness is not a sign of MS. The tingling could be stress. I didn't like this idea too well. I knew it was something more. I went to my own Dr. the next day. She recommended a Neurologists. Again I. FREAKED. OUT. I knew what Neurological appointments were about, I'd been there, done that with my mom. Spinal taps, MRI's, blood draws, etc., did not sound promising to me.
We set up the appt. with the Neurologist. The earliest she could see me was in June! In the meantime I was left to my own devices. Which included the freaking out (did I mention that before?) and the clinical symptoms.
The tingling began to spread. It worsened in the sensation part of it. Pretty soon, both of my legs were "numb" and I couldn't walk. Well, OK, I could walk, but it was U.G.L.Y. At one point I used a walker. Have you ever used a walker? At 27 years old? With a 10 month old baby in tow? And a husband on a business trip in Singapore? People stared. I mean it. They stared. Old people stared. They had this look on the face that was incredulous that a young person was using a walker.
My lowest point came on my birthday. My parents, who were and always are so good to me, were trying their hardest to get me out and doing things, taking my mind off of the situation. They took me to lunch on my birthday. After we were done eating, we left the restaurant and went to get back in the car. They drove a Blazer at that time and I had to swing one dead leg up to get in. I fell. On my rear. In the parking lot. Guess what? I. FREAKED. OUT. I was so embarrassed, I just sat there. I cried. I had a mini breakdown. I believe something along the lines of "I don't wanna live this way" came out. Sort of a dramatic moment in my life.
Fast forward a couple months, a full blown panic attack, spinal tap, 11 vials of blood, 3 MRI's and many neurological tests later. Guess what? It's MS!
By this time, the tingling and numbness is starting to subside. The full blown vertigo I had for a week or so had passed (thank GOD) and a treatment regimen was started. Which can I just tell you the treatment regimen in itself was terrifying? Self injections. Intra-muscular. 1 1/4 inch needle. Once a week. When I first saw the needle that the home health nurse brought to help me set up, guess what I did? I. FREAKED. OUT. Do you notice a running theme here?
But the point of this anniversary, is that I have been living with MS for 5 years. I'm doing well. I'm not letting it run my life. I'm not letting it have it's way with me. I firmly have a grasp on it, at least right at this moment. It has a mind of it's own and takes off at times. One thing I've learned though, is "mind over matter." This does not work in all situations. But if I notice a flare up beginning, I follow this mantra: STAY. CALM. Freaking out is SO not good for a disease that likes to wreak havoc on your nervous system. I've only had a couple of minor flare ups. (Now that I've actually put that in writing, everyone say a quick prayer for me that it won't come back and bite me in the rear!) I'm managing the treatment. I've got the reins for now and that's all I can ask for.
Here are some lists I've made in my head, of what living with MS has taught me, what I try to focus on now and how it's affected my every day life.
MS did NOT:
keep me from having another baby when I felt it was time.
keep me from trying any physical activity that I would have before the diagnosis.
turn me into a worry wart (unfortunately, my grandma was diagnosed in the 80's when there was no treatment, and she suffered greatly from worry and it affected all aspects of her life)
take over my life and claim me as a victim to it's waxing and waning
MS has taught me:
that it takes my nervous system 4 times the amt. of energy to do any one thing that a normal person can do.
that every day I wake up and can take my kids to school, the library, store, etc., is a GREAT day.
to pay attention to my body and the signs it gives me. MS is actually a good indicator of what may be coming in terms of getting sick. It can tell me to slow down. Sometimes I listen, sometimes not so much. But it's better to listen, for sure.
that when I was little and I was so angry at my grandma for being so grumpy all the time, it wasn't her fault.
that I'm much stronger than I thought: I didn't ever think I'd be able to do injections.
MS will not:
keep me from being a huge dork.
keep me from loving my kids more than my own life.
keep me from making new friends.
make me cry today.
MS has:lost me a friend.
made me some friends.
made me a better friend.
shown me what a WONDERFUL husband and family I have.
made my mom and I sisters in this disease and treatment. She gets to do the whole injection thing too!
MS BETTER NOT:
mess with my children.

Am I glad that I have it, with all I've learned? NO. Would I give it back if I could? YES. Did I blame God in the beginning? YES. Have I learned that God doesn't do this to people? YES. Has it strengthened my faith? ABSOLUTELY.

So for right now, I DO HAVE MS. But MS DOES. NOT. HAVE. ME.

12 comments:

Vivienne said...

Wow. That sucks that you have MS, but it is inspiring the way you are choosing to deal with it. Thanks for sharing this, because although it may not be MS, everyone faces something that can potentially be debilitating (mental, emotional or physical) and your post is a nice reminder for all of us that so much of the battle is attitude.

Jessica said...

Macey, you are so inspiring to me (and by the way, great "This I believe" story!!). As you know, I have a family history of this too, my dad has had MS since I was in 2nd grade. My great grandma had it too. This is something I think about late at night, that I too will be affected. Thank you for giving us an insight to your life with MS and how your attitude can make all the difference, it's comforting to me..

MiMi said...

Wow, you guys make me feel way more inspirational than I am! If you want, you can steal it, Jessica, for your "This I believe" story! I've watched my mom fight this thing and basically try to make it a "non issue" so that's really what I try to do, most days. Thank you for your sweet comments! :)

mom said...

Macey, I have to tell you I could hardly read this for the tears in my eyes. When you a tiny little girl you had such an attitude. You were tough and no one was going to push you around or tell you what to do. It scared me! I felt that God made you so strong willed for a reason, I (the worrier that I am) worried all the time what was in store for you. I will never forget the sick to my stomach feeling when your leg went numb. And yes the panic attacks I tried to hide from you. But I know that God won't give us anything we can't handle. Between the two of us we will kick ms butt for ourselves, grandma and everyone else suffering from this. One other thing the Lord gave you was a great big heart of gold! I love you Macey.

Ali said...

Wow this was truly inspirational! I have never dealt with any sort of medical condition like this, and I hope to never have to, but I really admire your courage, and can't honestly say I'd come out the other end with as much dignity as you.

The Only Girl said...

Well said Macey!

I just did the MS Walk in our city yesterday. This was my 3rd year. I walk for my dear friend who was diagnosed in 2004. Like yourself, she is doing well but hates her injections, is learning her limitations, but still living life.

Unknown Mami said...

I did not know this. You are awesome and strong, but you already knew that. It takes a lot to accept certain circumstances that are handed to us and move forward in a positive way. I'm proud of you.

jessalyn said...

you are amazing lady.

i had no idea, but your approach to this is so inspiring. and you are an amazing role model. your kids will learn so much from watching you maintain a positive attitude.

thanks for sharing this with us. :)

Dee said...

You have such a great attitude about it girl! That helps get you through I'm sure!!

Trixie and Tess said...

This was a great post, Mimi!! Sorry I missed it the first go around!

I'm so glad that MS does not have you!! You're an inspiration!

Love you!

Tess♥

Myya said...

I dint think I've ever read this before. It was beautiful & so powerful. You my friend are strong, courageous & a total rockstar!!

Myya said...

Wow! Even though I know all of this reading it made it so much more real. What an awful thing to go through. Just awful! You are such a strong & courageous person. You shine with your wit & sense of humor. There is no way that MS is going to take you down! What beautiful & powerful words you shared.