Thursday, November 7, 2013

Thanksgiving

I have much to be thankful for.  Don't we all?  There is always a reason to rejoice, always a reason to thank God.  

Three years ago around this time of year, I was 'diagnosed' with MS.  I don't really think I have MS, I'm just not sure the Neurologist knew what else to say.  I fit the model. I had a few lesions on my brain, I had loss of motor function, evidence of protein in my spinal fluid, not to mention extreme burning and numbness in my extremities, as well as in my face.  Weird, I know.  

I started taking various medications, including rounds of intravenous steroids (to control inflammation) tramadol (for pain- a "fake" opioid ) klonopin (for vertigo) excessive amounts of vitamins (for the heck of it) I was also prescribed, but never actually took Lyrica, Teriflumoide (or something like that) Cymbalta, and some other things that I don't remember.  

I hated the way I felt, and I hated the thought of being in bondage to medication if I didn't 100% without a doubt need to be.  I was also terrified of the thought of a wheelchair, but as things progressed my muscles became more atrophied and I didn't have a lot of strength in my legs.  I was so dizzy and I fell pretty much every time I closed my eyes. Oftentimes in the shower.  I had Zero balance!

I started running before I had MS, and even maintained a running lifestyle during my pregnancies.  However, the most I ever ran at one time was about 2 miles.  After I was diagnosed with MS, I quit running.  Not only was it physically difficult to run because of the numbness, it was mentally challenging, because honestly I was a little depressed.  

So I didn't run from about November 2010 to April 2011.  Then, for reasons that I don't quite remember, I decided to go out for a jog.  I was apprehensive because I was prone to falling and my legs were numb.   I felt nervous about running on the road, so I started running on the treadmill at the YMCA.  I figured if I fell, at least I wasn't at risk of getting run over by a car!

Then, sometime in the Fall of 2011, Josh announced to me that we were going to run a half marathon.  A WHAT?? You want me to run 13.1 miles?  

But I did it.  I had learned a technique of counting my steps as I ran, and it helped me stay balanced.  Thankfully I don't need to do that anymore!

I continued to run and get stronger.   Eventually I stopped taking all of my medications.  That is another story, but I will tell you one thing, some people in the medical profession are not in the business of keeping you off medications, that is for sure!  The last time I was at my Neurologist office (about a year ago) I mentioned to him that I would like to stop taking benzodiazapines, (klonopin) because I had read some pretty horrible things about them,  I thought they might actually be making my vertigo worse, and I'd really like to try to deal with things medication free for as long as possible.  His response:

So do you want to up your dose since it's not helping with the vertigo anymore?

Oh jeez, did he even hear a word I said?  At that point I decided to stop seeing my Neurologist.  I'll find a new one if I decide to go back!

Wow, this is not really what I had set out to write about, but that is okay.  I guess my message is, if you're dealing with a chronic illness, especially one that entails chronic pain or numbness- put those MUSCLES and NERVES to work!  Take care of yourself.  Eat well, limit fast food/junk food, get outside and enjoy the sunshine when it's available.  Don't resign yourself to thinking you can't, because chances are, you probably can! 

It's easy to fall into depression or bunny trail down paths of miracle medications.  Don't get me wrong, I am NOT anti-medication, I know that medication can work wonders in some people's lives, but first start taking care of yourself in the best way possible.

As I write this, I still deal with the effects of MS (or whatever it is!) Today I woke up and my legs are on fire.  When I put my hands under the cold water, it feels like the water is burning hot. It's hard to hold a pen because my fingers are so numb.  When I take a step, I feel like I'm being stung by a hoard of killer bees.  I think I have a cold, and I've noticed when my immune system is down, or seasons change, I tend to have flare ups.  That is okay.  I will deal with it, and if it gets too bad, I had better find myself a new neurologist so I can get some IV steroids :) 

Okay, now I must get back to my real life, which consists of playing a game of "spot it" with Jeremiah, then going to pick up the kids from school



This is us at the Monumental Half Marathon last Saturday (Nov.2) Our 4th half marathon! I ran my best time 1:55 yeah, baby!  We are now officially signed up for a full Marathon in April...oh dear.  26.2 miles, here I come.  

A picture of Christian and Heidi dog, just because I think this picture is way too cute to not post.
He looks so happy- he loves his dog.


We went to Turkey Run during Fall break- we really enjoy hiking at the State Parks in Indiana.  We really do have some beautiful parks in this state!  
I am so thankful for my family.

3 comments:

  1. I can't believe that neurologist. I had a run in with a real jerk of a rheumatologist years back and I know what you mean about them just wanting to push drugs.

    I know that I have mild "fibromyalgia" which tends to flare up when the weather does certain things and such. It's nothing compared to what you've got going on, though.

    Good for you guys running that half marathon! I can't imagine. But I'm trying to get Joe to buy me a treadmill so,baby steps:)

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  2. Sarah, I think it's great you aren't taking all those meds anymore, but I hope you're still taking some vitamins. The thing about MS, though, is it's an autoimmune disease, so when your immune system is very strong, it is capable of doing its worst to you. Flare ups of MS aren't usually a symptom of a compromised immune system -- just the opposite. My Neurologist prescribed steroids to quell inflammation too, but I never took them. The symptoms of numbness and pins and needles just went away on their own, in about three weeks. I have a great neurologist (not the one who prescribed the steroids) and he just talks with me about the disease, makes recommendations, we talk about the latest research, and then he asks me what I want to do and he endorses it. He's a pretty old bird, one of the founding doctors of the partnership, but I don't feel "listened to" by any of the other (4-5) neurologists I've talked to -- all but one in the same partnership. Even the MD that specializes in MS (that I had to wait 9 months to get into see for 15 minutes, and he said that was an extra special long time) just wants me to take the meds and shut up. Not going back to HIM. Well MS is a disease unique to everyone who has it. I'm glad you've found a way to live with it. Take care. Laura V

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  3. Yes, Laura I do still take vitamins, although not as often as I should. I have not heard the idea that flare ups aren't usually a symptom of a compromised immune system, in fact my neurologist said quite the opposite- but it seems like nobody can really agree on what causes MS or what exacerbates it. Such a confusing disease!

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