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Tecfidera

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Jamie-Lynn and Hiding

 I just learned that Sopranos star Jamie Lynn Sigler came out as having MS.  She hid it for almost 15 years.  Holy Crap!  I couldn't hide it for a minute.  That poor woman.  I was doing an episode of CSI when I was in the middle of my diagnosis.  I was having electric shocks, and tingles, vibrating legs, and lots of anxiety.  I didn't say anything because I was only there for a week and why would I?  But my character was a woman whose husband had just died and I had to cry in most scenes so it was pretty easy to get into character.  I was thankful though, at the end, that it was over and I could go back to just dealing with everything.   It's weird enough to be working and have all these feelings in your body, fatigue, etc. but then to have to lie about it too just makes things even harder.  We are lucky though that we can work.  A lot of people aren't able to work at all and I feel for them.

 My neurologist at the time told me not to tell anyone about the MS.  That no one would hire me.  That there was a stigma.  That is what they told Jamie and it's probably true.  Jamie Lynn was working a ton and to come out could have cost her a lot.  I'm glad she came forward.  Now is a time of breaking down barriers and stigmas.  It's a time of growth.  The only way people will be more comfortable hiring someone with MS is if it is familiar to them and not such a mystery.

  I had a friend say her ex had MS and after he was diagnosed she didn't find him attractive.  I heard a woman making fun of a girl in class who would drop things and trip because she had MS.  I have wondered if I would still be attractive once everyone knows.  I have wondered if I am killing my career by making this blog and doing this horse ride.  And then I wonder if anyone will even read it. It is such a vulnerable situation.  Weird right, wondering if you will lose the ability to use your legs is understandable but then to wonder if you will still be attractive?  Where the hell did that come from?  Sounds pretty shallow but that's the stuff that goes through your mind!  Am I different now?  Will people like me?  Who will help me if I need it?  Can I still have fun?  I'm too young for this!  I don't want to just sit down and be mellow all the time!  Are people going to make fun of me?  You're whole existence comes into question.  But like Jamie says, we gotta take our power back.  I can't hide it.  I have a big mouth and I say what's on my mind, even if I don't look so hot afterward.  So Jamie took one for the team!  I'm sure it's a big weight lifted off her shoulders.  Now I'm gonna use it before I lose it and get to riding!!!

 


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Training in Montana + HSCT

Me and the ponies coming through mountain pass.  Grizzly country!

Me and the ponies coming through mountain pass.  Grizzly country!

I just got back from Montana!  I went into the mountains with an expert horse packer, Wayne Kryzci from Outlaw Carriage Company.  I learned to tie a sierra box hitch, how to put on pack saddles, a secret trick for when your horse doesn't want you to put on the bridle, how to put up an electric fence, how to tie a top pack.  I also learned that I would rather live with less than have to move around a couple hundred pounds every day and night!  The whole point of this trip is to simplify.  Get away from phones and advertisements, judgments and fashion, pollution and anxiety.  I don't need a table and chairs or huge bottles of anything.  I can't wait to start developing my own system.

In other news, I have been thinking a lot about HSCT.  It's a chemo procedure where they ablate (kill) your immune system then reintroduce your own stem cells back into your body and you build a brand new immune system.  Sounds amazing right?  You have a brand spankin new immune system and you don't have MS anymore.  I mean, it's much more complicated than that, I'm just saying.  It's actually a little dangerous since you will go awhile without an immune system and any infection could be deadly.  You are in the hospital for about a month and need to be very careful for about a year.  They do thousands of these procedures on people with cancer but using it for MS is just starting out.  There are some stage 3 trials going on and there are hospitals around the world where you can pay from $40,000 up to $150,000.  After my whole tooth pulling experience I am wary of jaunting off to a second or third world country to have what some call an  "experimental" procedure.  However, the science is very promising and there are a lot of success stories.  There are so many blogs and articles about it I won't go into all the technicalities here but I will give my two cents, for what it's worth.  I think it's a great idea if you are suffering and the Disease Modifying Drugs (DMD) aren't helping.  It has been shown to work and if you can get the money and you are at your wits end then more power to you.  For me, the sterility after is a big drawback.  I still want to have kids.  Also, I just started my Tecfidera 6 months ago and I want to wait and see if it works.  I also have mild symptoms that I can deal with.   There have been a couple scary times but all in all it's mostly just creepy crawly feelings, like all the time.  I think that science and technology make leaps and bounds every year and new breakthroughs are happening faster all the time.  In 5 years I think the science will be way farther than it is right now.  Since there is a 1 to 2 year wait list for the stem cell transplant I am going to wait 3 years, monitor my progress and how I am handling my drugs, and possibly apply then to get the procedure in 5 years.  How's that for a 5 year plan!

1. Ride a horse across an entire country

2. Make a baby inside my body.

3. Get a bunch of chemo, some new stem cells, and a brand new immune system.

No body ever said I wasn't ambitious :)

 

 

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