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!!!

Dinner with Doctors and Doctors with Dinner

I was recently invited to a dinner with the top researchers and Neurologists in the Multiple Sclerosis field.  I was invited by Nancy Davis to hear them speak and learn and get to know the charity Race To Erase Ms and the Center Without Walls.  I am so impressed and was so honored to be there.  Instead of spending donations and funding on building a building, they put together doctors from all the top labs and share their work so they can progress together as a team.  It's like Fantastic 4 Marvel comic kind of mad scientist extravaganza of MS research.  They are so interested in finding a cure and sharing their knowledge with each other.  There aren't just trying to make money or get people on drugs for a kickback or any of the other horror stories you hear out there.  Being there gave me hope and faith in the medical community and I am so happy to help raise money for this amazing group of people.  They fully believe, and so do I for what it's worth, that they will find a cure.  And they are close!  Oh to be a fly on the wall at all of their get togethers.

So here is some of what I learned!  Vit D3.  We've heard it before but there is actual research to back it up.  But you have to take a lot!  Like 1000 IU a day!  Exercise!  We also know this but again, there is proof.  But there is a sweet spot.  You have to do it, but not to the point of exhaustion.  If you go too hard or do too little, you progress even faster.  So be nice to yourself and push it, but not too hard.  This worried me a little about my ride but I just have to remember to push it...but not too hard! hehehe

There is a new drug coming out that the Harvard guys are in love with!  I can't even pronounce the name it's something like Ocrelizamab?  But you get an infusion twice a year and that's it.  It's "the closest thing to a cure yet".  We'll see buddy, we'll see.  I can't wait to find out though :)  Apparently it doesn't dampen the immune system like the other drugs, it acts on B-cells.  So maybe less side effects?  hmmmmm time for obsessive research.  Get back to ya on that!

So much more to say but, I'm not a doctor so I'm gonna shut up. 

Live to Love and Love to Live.  Probably cures everything.

xx

T

Training in Montana + HSCT

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 :)

Why? You Ask.

Why do I want to do this ride? Because it terrifies me. Because I need to get out of the city.  Because I need to feel the earth.  Because I need to make something I can be proud of.  Because I need to use my muscles and stretch my character.  Because it isn't always going to be pretty and that makes it beautiful.  Because I have no idea if it's possible for me to accomplish but I will finish it if I have to drag myself there.  Because I don't want to be so dependent on oil and restaurants and technology and I wonder if there is a way around it.  Because I want to survive on less and simplify.  Because a routine is good. Because I don't know if I have the skills but I am trying like hell to learn everything to make it. Because I need a tangible goal to put everything I have into.  Because every day I wonder if I wake up tomorrow and can't walk, what would I wish that I had done?  Because I want to see mountains and sky and space that I have never seen before.   Because people are beautiful and I want to meet them and horses bring out the wonder and excitement in everyone.  Because I'm an adventurer and life is what you make of it.

My Head is OK!!

Modern medicine is kinda cool sometimes.  This is a 3d image of my skull taken by my dentist to fix a tooth I had pulled.  As soon as I was diagnosed I went into freak out mode on the internet.  I read that root canals can tax your immune system and lead to MS.  So I had my root canaled tooth extracted.  Now that I am not freaking out as bad, I wonder about the validity of the whole root canal thing but I guess it's better safe than sorry? haha I look like a pirate right now!  IF you are newly diagnosed with ANYTHING I would recommend not making big appointments for optional procedures for at least 6 months!  I thankfully was introduced to a great doctor at the forefront of MS research at UCLA.   My doctor, Dr. Geisser ordered all new MRI scans and blood work to check my 6 month progression.  I am happy to say that I have no new lesions!  The lesions I already had are not inflamed, so they aren't growing.  Things are starting to calm down.  I am slowly going to transition to an auto-immune friendly diet of low saturated fats, little to no gluten or sugar, and lots of fresh, whole foods.  I'm not as crazy obsessed as I was in the beginning or freaking out and being fanatical.  Finding balance is the only way.  It has been 7 months since my diagnosis and I am starting to be more comfortable letting friends know.  I guess that's good since this blog will be public soon and available to read!  It is easy to tell strangers but telling people close to me has been really emotional and hard.  It feels like telling them I am dying, even though I'm not (well, we all are but you know what I mean).  A lot of people start asking me if I am ok every 15 minutes.  Thankfully, I am.  I am great actually.  I am inspired, I have purpose. I have so much research to do for my trip and we all know how I love getting on that internet!.  I feel lucky that I have mild symptoms, a great doctor, and a people supporting me with this crazy idea to ride horses across the country!  I'm off to meet another horse in my search for my soul mate road horse.  I'll let you know when I find him (or her).

There is a crack in everything, that's how light gets in... AKA Friend

Leonard Cohen, Book Of Longing

When Leonard Cohen says the word friend, he means it.  The word friend has so much love, so much respect, so much meaning, you feel that he could survive only on that word.  It's deep and warm and lovely.  If I could make someone feel wanted and held and safe and loved with just one word, I would.  

People are starting to help me with the ride!  The Long Riders Guild have been communicating regularly to help me with my planning.  It's so helpful to have people who have done what you are doing give you advice on what gear and strategies to use.  The guys who shot the film "Unbranded" are also helping, thanks to an amazing sweet friend who saw their movie and called them on my behalf.  Another sweet friend who heard of the journey contacted the Race to  EraseMS people for me.  They have agreed to help me since I am donating the money raised to their foundation.  Their foundation is striving for a cure and I believe they will get there!  With all this support and friendship, I know we can't fail.

Thank you, Friends.

Here's a little Cohen for your troubles :)

Thunder Beings and Candle Songs

Savannah, Ga Cathedral

I have been in Kansas visiting family.  Spring in the Midwest is no joke.   There were tornado warnings, sirens going off at noon, sideswiping rain, and hail.  It's beautiful.  It's chaos.  I miss it.  I can't believe I'm going to ride a horse through it.  I kept envisioning myself hunkered down on a horse out there, rain jacket over my saddle, rain pelting my hat, hail bouncing off, thunder shaking everything sounding like gun shots.  I have to be honest, it's a little frightening but I get a giant jolt of excitement!  When I was a kid I would go out in the wheat fields during storms and scream and run and dance in the thunder.  My old friend who gave me my first medicine feather told me the Thunder Beings were dancing with me.  I've felt pretty disconnected from spirituality lately, but I want to re-connect!  I've been wanting to pray to my ancestors all my life, but it's hard when you don't know who they are or what they did.  I was sad the other night because I watched Hidalgo and when he thought he was going to die in the middle of the horse race he called on his ancestors and they surrounded him.  I don't know how to call mine.  I used to think they were Cherokee, now I found out they were Shawnee.  Some were Pure'pecha from Michoacan, I don't know any of their songs.  I did a lot of ceremonies with the Lakota and I know some of their songs but I know I'm not Lakota.  I light candles in Cathedrals for my mom and I know the powers of Universal love are there for everyone.  My father was German.  He passed away a few years ago.  Every year on the anniversary of his death I always meet a man who talks to me about animals or fish.  My dad loved fishing.  He was a noodler, catching catfish by hand.  Last year I was on the Pine Ridge Reservation and a man walked up to me and asked if he could sit down.  He said he wanted to sing a song to me that he used to sing to his daughter.  He couldn't sing it to her anymore and would I please listen.  It was so beautiful.  It was a lullaby.  I guess I do have a song.  Universal love.

A disease of young people

Ripley Davenport swimming the Kenmare River in Ireland pulling his supplies behind him.

I've never thought of MS as a disease of the young.  I thought it was something that happened when you get older and need a walker or wheelchair and all of that.  Honestly, I didn't even know what it was until my sister was diagnosed.  But, most people are diagnosed between 30 (which we all know is the new 20) and 40 (which must be the new 30).  People are living longer and feeling younger.  Let's find some other youngsters out there who aren't letting MS win.

Here's one!  Ripley Davenport.  www.ripleydavenport.com  This badass crossed Mongolia, on foot!  He man hauled his gear in a cart he made.  I'm so happy I have a horse!

I just wanna dance..... and exploding toilets

I don't know when I stopped dancing.  I used to dance all the time!  I love dancing and I love music and I used to be surrounded by it.  But somehow in the last year or two, I've stopped.  I'm tired all the time.  Driving through the city it feels like I'm being screamed at by all the traffic and billboards and people.    I can't wait to get out of the city!  I can't wait to feel free!  

In other news....

I have been on Tecfidera for almost a month.  Anyone wanting to start, here is my experience.  It really isn't that bad.   First have your white blood cells checked.  If they are low, you can't go on it.   It will lower them even more and put you at risk for infection and PML, a deadly brain infection.  So aside from getting your white blood cells checked every 3 months, it's not that bad.  I get flushing.  My skin gets red and hot.  It burns and itches and sometimes I get mild hives.  HAHA that sounds worse than it is and it doesn't last that long.  The worst is that it upsets your stomach.  They say to eat a cheeseburger or something fatty to cut down the stomach irritation and flushing.  I take it twice a day.  I am supposed to eat a cheeseburger twice a day...forever?  So I may be a blimp soon!  You can take over the counter stuff, like Zantac, to lighten your side effects.  Good news is, these symptoms are supposed to go away after a couple months.  I literally had to race home the other day from my favorite restaurant because I thought I was going to ummm..explode? all over the place!! Hahaha! It's funnier now than it was then.  Then, at another restaurant last night, the toilet actually exploded!  It sprayed me with water and I was soaked through to my underwear!  I had to sneak out of the restaurant and to my car and take off my clothes and drive home pantless.  I am now manifesting this stuff!  We were given a really expensive bottle of sake by the owner though so it was all a good laugh.  I really hope the Tecfidera is protecting me from new lesions.  I won't know until I get another MRI.  I am meeting with the head of the MS center at UCLA on wed to see if she will be my Dr.  I am so excited to have an MS specialist!  Wish me luck :)

Don't Let the Fvckers Get You Down

When I was going through my diagnosis with the MRI's, blood drawing, spinal tap, spinal head ache, injections,  my first infusion, blah blah blah,  I was having a really hard time.  My friend sent me this video.  It worked!  I dressed in all black with black sunglasses and pretended I was a vampire from that Jim Jarmusch movie "Only Lovers Left Alive" and I needed to sneak into the hospital to get my blood..... and listened to this.  It makes me wanna scream! And jump around and shave my head (maybe not that far) and make the most out of every day!!  It was my war cry, and so.... you're welcome.

Motorcycle trip!

My boyfriend and I decided to ride his new motorcycle to see Sturgill Simpson play in Tucson, Az.  We rode around 1500 miles in the trip!  Near the Salton Sea we went through a desert windstorm which turned into a whiteout for awhile.  Battling the wind and sand the bike was at a 45 degree lean for hours.  It was terrifying and exhausting with the semi trucks threatening to suck us under and then push us down once we blasted past.  I finally had to decide to love the semi's and the wind.  I couldn't keep up that amount of adrenaline for so long!  So when a gust would feel like the wheels were going to slide from beneath us, I would laugh as loud as I could and pretend it was a rollercoaster ride.  We started leaning our heads down and I felt like a rocketeer.  I started asking the trucks to honk.  The trip became an adventure and we really felt like we had accomplished something when we finished.  The day after the ride I had the worst MS feelings I have had yet.  My legs vibrated and shook until I couldn't stand and I couldn't bear to move even a toe because of the pins and needles feeling.  But, I meditated.  I breathed.  I hydrated.  And it passed.  I think it was so good for me to experience that.  I know that it will pass and I can complete my journey.  We rode another 500 miles after that.  Traveling at 90mph is exciting, but I really can't wait to travel 5mph with my horse.  I can't wait to feel connected to the land, as opposed to racing over the top of it.

Good news/Bad News

Well, I was putting off going full force on preparing for the ride because I had 6 months to try and get pregnant!  I wanted to get pregnant before starting Tecfidera.  It's a new drug for MS that you shouldn't get pregnant on.  My Neuro gave me a few months, but it didn't happen :(  But the good news is, I can do the ride!  I wouldn't have been able to with a baby.  Everything happens in the only way it can happen.   So, onward and upward!  Time for an adventure!  Maybe I'll try again next year .  Let's see how this medicine works!  Is it weird that I like getting an MRI?  I think it's so interesting to be a little science experiment and look inside my brain!  It's also cool to see if what you have been doing is affecting the lesions.  I'll let you know!

First Post!

What an inspiration!  If Robyn Davidson can cross the desert of Australia in 1978 with 3 camels and a dog, then I can cross America with horses in 2016!  I was planning my trip when a good friend showed me pictures of Robyn and my mouth dropped.  What an epic journey.  And she did it alone.  I hope I can be as strong as she was.  I'm about a year form departure and I'm getting the website up, taking riding lessons, and going to start looking at horses tomorrow!  It seems so far away, it's not quite real yet, still just a dream.  I wish I could leave tomorrow...