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getting the run around

I just read about studies claiming that botox works as a treatment for depression.  They were positive at first but now there are doubts as to the efficacy.  Well, they should just come hang out in hollywood!  I’m pretty sure that shit ain’t werkin!  There are a lot of depressed frozen actresses out there.

no really!  I'm smiling!

no really!  I'm smiling!

 

ok, I have basically forgotten that I have MS for the last month.  I was getting certified for diving, hanging with friends, exploring, basically having the best time ever.  My body loves the sun, loves swimming, the ocean makes my hands feel normal, and being on a boat means that I don’t run so I don’t get tingly in my legs! yay!  But… back to reality.  I got word from my doctor that my white blood cells are starting to come alive again, which means my B-cells are waking up to start eating my brain again.  Time to go back to vampire land and get my infusion.  So here’s my latest MS drug news rant.

 

I am on a drug called Rituxan.  It’s been around for over 20 years.  It’s highly effective and very safe.  It’s for blood cancer but has been widely prescribed for autoimmune diseases for a long time.  My insurance doesn't want to cover it and I am a month over due while I search for an infusion center.

There is a new drug out now that is called Ocrevus (ocrelizumab).  I first heard of this at the dinner with doctors with Nancy Davis and the Race to Erase MS people.  They were heralding Ocrevus as the closest thing to a cure ever and were super excited.  This was last year.  The FDA just approved it on March 28th for public use.  So after reading a bunch of articles and papers and blogs, here are some thoughts.  

 

Rituxan was the first drug to work on B-cells and Ocrevus is the second.  All other MS drugs work on T-cells.  Honestly I don’t really know what that means other than illustrating that these are very similar drugs. They are both manufactured by the same company.  Rituxan was never put through clinical trials for MS.  Rituxan came off patent in 2015 and companies were allowed to start making generic versions and the price went down.  Before that happened, Genentech started developing Ocrevus.  Same company makes a drug that has basically the same mechanism of action for the same disease.  To be fair, Rituxan is a chimeric molecule, meaning that the DNA is part human part animal (mouse).  So, some people could have an allergic reaction to the mouse part of the drug.  If you have a reaction It usually happens the first couple times you get it and they monitor you and give you IV steroids just in case.   Ocrevus is all human so they believe it is better tolerated.  But, no one has been on Ocrevus for longer than 3 years and 1 in 50 people develop cancer tumors.  Rituxan does not have an increase in cancer and people have been taking it for 20 years.  Why wouldn’t they stick to the safe drug that already works rather than abandoning it and starting from scratch?  cuz….money.

 

After my last infusion I got a bill for $40,000.  My insurance didn’t want to pay because the medicine was used “off label”.  My doctor wrote a letter saying how important it was that I received it at that time and went back and forth until finally they agreed to pay for it this time, but not next time.  Now, I am supposed to get it again in a week or two.  My insurance will only cover it if I get it from their pharmacy.  My doctor works at a hospital that will only give medicine that is bought from their pharmacy.  So if I want my doctor to give me the infusion (of course!) I would have to pay out of pocket.  The infusions last 6 hours hooked up to an IV machine.  I will go twice in the next couple weeks.  If I have a bad reaction, which has happened to me once and it was a shit show, the team surrounding me will be who is dealing with it.  So now in order for my insurance to cover the bill I have to go to some other infusion center, maybe an hour away, and be with strangers, without my doctor.  Cuz…Money.  Everyone wants that bill.  Assholes.  This is the American medical industrial complex.  And now they are telling me that next time I have to switch to Ocrevus the new breakthrough drug!  Which isn’t a breakthrough because it’s the same mechanism as my 20 year old drug just more expensive and with a higher cancer rate.  Cuz….MONEY!  

 

here are some links.

http://www.healthnewsreview.org/2017/04/fake-breakthrough-fake-news-one-physician-researchers-takeaway-news-coverage-ms-drug-ocrevus/

 

http://www.wheelchairkamikaze.com/2017/03/leading-ms-clinic-issues-cautionary.html

 

Apparently in Europe you can get Rituxan for MS pretty freely and it’s way less expensive.  So someone from a socialized health care country needs to marry me in the next 8 months in time for my next infusion! Sweden is the leader I think in prescribing rituxan, so….anyone?

Here's me with cherry blossoms!  Marry me off! 

Here's me with cherry blossoms!  Marry me off! 

 

 

Other thoughts.  What if I just do nothing?  What would happen if I get out of the medical hamster wheel and just live my life?  Does anyone do that?  Just eat healthy and stay off the drugs?  You never know what is going to happen with MS anyway.  Maybe I have a super mild form and all these drugs are for nothing anyway?  MRI’s give you radiation and drugs throw everything out of wack.  Not sure if denial is an FDA approved form of treatment but that’s a study I’d be willing to participate in.  Just live by the sea, play music, go diving and swimming, eat healthy, be happy.  That sounds like a much better treatment.  

I'll just be here if you need me

I'll just be here if you need me

 

Remember the Terry Wahl’s protocol of a modified paleo diet, exercise, etc?  She’s into ditching the drugs and treating the disease through lifestyle changes.  It is damn hard though.  I did well for awhile but then fell off.  Maybe it’s worth another go?   She finished her first clinical trial and it was confirmed that her plan does improve mood, cognitive function, and depression.  It doesn’t say anything about disease progression or mobility though… here’s the link

http://wwwmsviewsandrelatednews.blogspot.com/2017/04/a-multimodal-nonpharmacologic.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+blogspot%2FyGJv+%28**+Stu%27s+Views+%26+M.S.+News+**+%29

 

Well, I have thoughts on things other than drugs and the future so I'll leave this here so we can all move on.

xx

me

 

 

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Quick update

It's been forever!!  Here's the quick lowdown.  The Rituxan worked apparently.  I am back to normal almost completely.  My hands may have a "new normal".  If they get hot they get really sensitive, like in a hot tub they feel like burn victims.  But I can use them!  When I got back from Mexico and the Nahuatl ceremonies I started a band and I could barely play guitar or anything without them cramping and hurting but now I can play for quite awhile!  I am active, I am doing auditions, playing music, meeting with people, and generally back to normal.  I get my white blood cells checked every month because as soon as they spike I have to get my infusions again.  Still not looking forward to that but the doc says it won't be as bad because I am not in a relapse.  I have to be honest about the whole Wahl's protocol too.  I was soooo good on it!  (for awhile)  But then I wanted to have fun again!  Ugh so I have fallen off.  I am still not eating gluten or dairy so that's good but man trying to eat organ meats and seaweed all the time really took up my whole day.  It was fun to invite people over to eat hearts though hahaha I love to get witchy.  

I need to do an entire post on Leonard Cohen and his inspiration on my life.  I have 2 of the same shirt of his that friends have given me as presents.  I could feel that he was going to pass soon and I couldn't stop thinking about it.  I wrote a song for him using a line from the letter he wrote to Marianne, his lover, when she was passing.  I started wearing the shirts every day and was going to wear them every day til he passed.  It was two weeks before it happened.  I cried in an Uber when I found out.  I drunk texted the song to my neighbor who is a producer and also loved him.  He offered to record it for me so I have a nice recording of it.  We have been recording it so I will post as soon as it's finished.  Until then, here's the man himself.

My mirrored twin, my next of kin, I'd know you in my sleep.

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Frida Kahlo had two beds

Frida Kahlo and Diego Riviera slept in different rooms.    In Frida's room, she had two beds.  A daytime bed and a night time bed.  I am guessing it was when she was bedridden from one of her injuries or illnesses.  In the daytime bed there was a mirror at the foot of the bed and a mirror above her head.  There were her paints beside her on a table and dolls hanging around the canopy.  I guess the mirrors were how she painted her self portraits.  The night bed had butterflies above her head and more dolls hanging.  Near the night bed her ashes are resting in an urn shaped like a toad, her nickname for Diego.

I’m home, in LA.  I am reading a book of secret tibetan oral teachings and a book Bob Dylan wrote when he was 23 called Tarantula that he only just finally allowed to be published.  I got them in a little time warp book store in Mexico City above an American Legion where I met the owner who is a Hunter Thompson 1950’s character that seems like he works in a newsroom but he he’s an expat who sleeps on a loveseat surrounded by books he drove back in avan across the border dodging narcos .  I had a dream about the shop owner so I went back and told him about the dream and sent him a script I wrote about bordercrossings and a Trans boy and hopefully he’ll do a rewrite and we can sell it.  It’s a long shot but I had so much magic flowing through with optimism and coincidences so I just closed my eyes and launched the ball.  We’ll see where it lands I guess.  I wrote a lot about the Aztec ceremonies I was participating in but I think all I want to say is that I feel better and they were beautiful.  I have the problem sometime of saying too much.  When I say too much and give away too many details the story becomes less powerful for myself and the magic gets belittled somehow and I want to keep it fresh as long as I can.  I need that rocket fuel to figure out what comes next.  I have to write a proposal, write some interview questions, make some decisions, keep things flowing and still keep waiting.  Be still, Be gentle Be kind.  

 

My hands are working pretty well now.  That’s the only MS update really.  I finally got my energy back after the Rituxan infusion.  I was tired for about a month.  I lived at a friends house in Hawaii and ate smoothies and salad only before I went to Mexico City for a few weeks and worked with the Nahuatl healer named Ehe.  I am attached to him now, I feel like he’s my dad or something after he held the tissue while I blew my nose and cried and shook.  And now I am back to the familiar, the cafe’s the faces, the streets of LA.  Again to the plotting of a journey, to finishing what I already started and tying up the frayed ends.  I am selling Bow.  He is working cattle on a ranch in Georgia.  I am sending the Steel Mountaineer Saddle back the man who made it and loaned it out for the ride.  I am going to try and work and make some money so I can go back out in Spring and finish.  I am writing and making music and digesting that I am back at square one but with a lot of lessons learned.  I learned so much over the last few months!  I rushed, I pushed, I lived in a field, I trusted the wrong people, I was overwhelmed by my connection with some people, I ran away,  I was brave, I tried to go home only to find it wasn’t really my home anymore, I felt more at home in strange places than in familiar ones, I lost sensation in my body and then felt it creep back, I finally detached from old wounds, I was crushed and rebuilt more than once.  I changed my name.  I feel creative and alive.  I feel different.  I don’t yet know how to integrate all this into my old life in Echo Park.  I think today I will rest and read and learn some more from my books and learn what the others have to say.

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Hunter, oh Hunter

So I've been thinking a lot about purpose and goals, projects and inspiration.  The normal way of being and living outside the box.  Who the hell made the box and why do some people find it so comfortable while others are clawing at the sides.  Are some just born already outside of it?  Do they secretly wish they could get in?  Why do so many have a life altering experience and fully explode out of the ol' box just like our friend Hunter S Thompson had his ashes shot out of a cannon so that he would never be placed in the box even post mortem.  I personally feel like I was born on the edge, uncomfortably straddling said box between my legs like I tried to ride a boys bike that's just too tall or slipped trying to walk across some monkey bars, uncomfortable on either side, teetering back and forth between wanting those comfortable suburbs and getting close to them and free falling the other way into the bush with the lions before jumping out of the jaws of a hippo and fleeing towards a cozy vanilla.  

Hunter was amazing.  And in a lot of pain when I had the honor of meeting him.  I had just moved to Los Angeles and the world was all possibility and potential.  I had read Kingdom of Fear and Fear and Loathing and my friend Peter took me to a book reading of Hunter's.  Hunter asked a question and I was sitting 5 feet from him and of course raised my hand to talk to him.  He kneeled before me and spent a long time speaking with me.  Afterwards his wife came and asked if I would like to hang with Hunter.  He had a hard time walking and wanted to lean on me as we walked around and he spoke with people.  If this MS gets the best of me please remind me to use a sweet young shoulder instead of a cane!  He kissed me on the lips 3 times while I had a cold sore!  I said "Hunter, I have a cold sore" and he said "Oh girl, you think that scares me?" hahahaha  anyway, this letter he wrote to his friend when he was 22 speaks so well of goals and future and the path of life that I'm just going to post his thoughts instead of rambling on.  I love you.

TER S. THOMPSON ON FINDING YOUR PURPOSE

Published by THE HOUSEMATES on June 5, 2014

 

In April of 1958, a 22 year-old Hunter S. Thompson wrote a letter on the meaning of life when asked by a friend for advice. What makes his response all the more profound is the fact that at the time, the world had no idea that he would become one of the most important writers of the 20th century. Therefore his beliefs about purpose were hypothetical—they were statements of faith.

But if it’s true that our beliefs really do become our reality, then there’s no better example of a life fully realised than the one of Hunter S. Thompson. Let his perspective inspire you:

April 22, 1958

57 Perry Street

New York City

Dear Hume,

You ask advice: ah, what a very human and very dangerous thing to do! For to give advice to a man who asks what to do with his life implies something very close to egomania. To presume to point a man to the right and ultimate goal — to point with a trembling finger in the RIGHT direction is something only a fool would take upon himself.

I am not a fool, but I respect your sincerity in asking my advice. I ask you though, in listening to what I say, to remember that all advice can only be a product of the man who gives it. What is truth to one may be disaster to another. I do not see life through your eyes, nor you through mine. If I were to attempt to give you specific advice, it would be too much like the blind leading the blind.

“To be, or not to be: that is the question: Whether ’tis nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles … ” (Shakespeare)

And indeed, that IS the question: whether to float with the tide, or to swim for a goal. It is a choice we must all make consciously or unconsciously at one time in our lives. So few people understand this! Think of any decision you’ve ever made which had a bearing on your future: I may be wrong, but I don’t see how it could have been anything but a choice however indirect — between the two things I’ve mentioned: the floating or the swimming.

But why not float if you have no goal? That is another question. It is unquestionably better to enjoy the floating than to swim in uncertainty. So how does a man find a goal? Not a castle in the stars, but a real and tangible thing. How can a man be sure he’s not after the “big rock candy mountain,” the enticing sugar-candy goal that has little taste and no substance?

The answer — and, in a sense, the tragedy of life — is that we seek to understand the goal and not the man. We set up a goal which demands of us certain things: and we do these things. We adjust to the demands of a concept which CANNOT be valid. When you were young, let us say that you wanted to be a fireman. I feel reasonably safe in saying that you no longer want to be a fireman. Why? Because your perspective has changed. It’s not the fireman who has changed, but you. Every man is the sum total of his reactions to experience. As your experiences differ and multiply, you become a different man, and hence your perspective changes. This goes on and on. Every reaction is a learning process; every significant experience alters your perspective.

So it would seem foolish, would it not, to adjust our lives to the demands of a goal we see from a different angle every day? How could we ever hope to accomplish anything other than galloping neurosis?

The answer, then, must not deal with goals at all, or not with tangible goals, anyway. It would take reams of paper to develop this subject to fulfillment. God only knows how many books have been written on “the meaning of man” and that sort of thing, and god only knows how many people have pondered the subject. (I use the term “god only knows” purely as an expression.) There’s very little sense in my trying to give it up to you in the proverbial nutshell, because I’m the first to admit my absolute lack of qualifications for reducing the meaning of life to one or two paragraphs.

I’m going to steer clear of the word “existentialism,” but you might keep it in mind as a key of sorts. You might also try something called “Being and Nothingness” by Jean-Paul Sartre, and another little thing called “Existentialism: From Dostoyevsky to Sartre.” These are merely suggestions. If you’re genuinely satisfied with what you are and what you’re doing, then give those books a wide berth. (Let sleeping dogs lie.) But back to the answer. As I said, to put our faith in tangible goals would seem to be, at best, unwise. So we do not strive to be firemen, we do not strive to be bankers, nor policemen, nor doctors. WE STRIVE TO BE OURSELVES.

But don’t misunderstand me. I don’t mean that we can’t BE firemen, bankers, or doctors — but that we must make the goal conform to the individual, rather than make the individual conform to the goal. In every man, heredity and environment have combined to produce a creature of certain abilities and desires — including a deeply ingrained need to function in such a way that his life will be MEANINGFUL. A man has to BE something; he has to matter.

As I see it then, the formula runs something like this: a man must choose a path which will let his ABILITIES function at maximum efficiency toward the gratification of his DESIRES. In doing this, he is fulfilling a need (giving himself identity by functioning in a set pattern toward a set goal), he avoids frustrating his potential (choosing a path which puts no limit on his self-development), and he avoids the terror of seeing his goal wilt or lose its charm as he draws closer to it (rather than bending himself to meet the demands of that which he seeks, he has bent his goal to conform to his own abilities and desires).

In short, he has not dedicated his life to reaching a pre-defined goal, but he has rather chosen a way of life he KNOWS he will enjoy. The goal is absolutely secondary: it is the functioning toward the goal which is important. And it seems almost ridiculous to say that a man MUST function in a pattern of his own choosing; for to let another man define your own goals is to give up one of the most meaningful aspects of life — the definitive act of will which makes a man an individual.

Let’s assume that you think you have a choice of eight paths to follow (all pre-defined paths, of course). And let’s assume that you can’t see any real purpose in any of the eight. THEN — and here is the essence of all I’ve said — you MUST FIND A NINTH PATH.

Naturally, it isn’t as easy as it sounds. You’ve lived a relatively narrow life, a vertical rather than a horizontal existence. So it isn’t any too difficult to understand why you seem to feel the way you do. But a man who procrastinates in his CHOOSING will inevitably have his choice made for him by circumstance.

So if you now number yourself among the disenchanted, then you have no choice but to accept things as they are, or to seriously seek something else. But beware of looking for goals: look for a way of life. Decide how you want to live and then see what you can do to make a living WITHIN that way of life. But you say, “I don’t know where to look; I don’t know what to look for.”

And there’s the crux. Is it worth giving up what I have to look for something better? I don’t know — is it? Who can make that decision but you? But even by DECIDING TO LOOK, you go a long way toward making the choice.

If I don’t call this to a halt, I’m going to find myself writing a book. I hope it’s not as confusing as it looks at first glance. Keep in mind, of course, that this is MY WAY of looking at things. I happen to think that it’s pretty generally applicable, but you may not. Each of us has to create our own credo — this merely happens to be mine.

If any part of it doesn’t seem to make sense, by all means call it to my attention. I’m not trying to send you out “on the road” in search of Valhalla, but merely pointing out that it is not necessary to accept the choices handed down to you by life as you know it. There is more to it than that — no one HAS to do something he doesn’t want to do for the rest of his life. But then again, if that’s what you wind up doing, by all means convince yourself that you HAD to do it. You’ll have lots of company.

And that’s it for now. Until I hear from you again, I remain,

your friend,

Hunter

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soft things and women I love

Margaret Moth

Margaret Moth

Aung San Suu Kyi

Aung San Suu Kyi

Margaret Moth was a photojournalist for CNN.  She was beautiful and strong.  She always wore black eyeliner and was rumored to sleep in her black boots.  She named herself "Moth" after the tiger moth airplane she loved to parachute out of.  She covered the Bosnian war and the riots after Indira Ghandi was assassinated.  Those were the days of super heavy cameras that had cables trailing behind.  There was an instance when a fighter had a gun pointed right at her.  She pointed her camera at him and walked forward.  The guy carrying her cable was forced to go with her.  She got the shot, and didn't get shot, not that time.  While covering Sniper Alley in Sarajevo she was hit by a bullet in the face.  She survived but had part of her jaw and tongue removed.  She healed and went back 6 months later to finish filming the war with her speech slurred.  Finally it wasn't a bullet that got her, but cancer.  She is quoted saying "I wish I had gone out with a bit more flair, but I've lived to the fullest..."

Aung San Suu Kyi was leading a party to bring democracy to Myanmar (Burma).  She was educated at Oxford and went back to Burma when her mother had a stroke.  There were student riots all over and the military was shooting young people and killing massive amounts of people.  The people came to her because her father had won independence for them years before until he was assassinated.   She won the vote in the first democratic election in 1989 and the military rulers put her under house arrest and arrested all her friends and threw them in prison.  She went on hunger strike until she was assured that they wouldn't be hurt.  Suu was under house arrest for 15 years.  She was inspired by peaceful protests of Martin Luther King and people would gather in the thousands to her her speak.  They would gather outside the gates of her home and she would speak over the wall, until the army guards started shooting to chase people away.  The military wouldn't let her children or husband visit and her husband eventually died of cancer after not having seen each other in over three years.  Suu was awarded the Nobel Peace Prize and is still speaking and fighting.  There were finally elections held in 2015 but the military wouldn't let her run.  But, they elected a man from the same Democratic party win the presidency and she can "advise".  Through everything the gov't put her through she has remained hopeful, stoic, elegant, and strong.  I was in Singapore in 99 and we all talked of trying to go up there and hear her speak.  I don't even think it would have been possible but I am glad to have heard of such an amazing woman when I was young.  In America our role models are vapid pop stars and it isn't "cool" to care about politics.  Seeing a woman fight for rights of others was very impactful.

 

Did having a mission give these women energy.  Did knowing that they were fighting for something bigger than themselves give them stamina?  Did having a purpose give them life?  Their purposes were just thrust onto them, did they have a choice?  I met a man who was with Maggie Moth in Sarajevo.  He said she was wild and reckless and maybe had a death wish.  She did things no one else would do.  I said I used to dream of being a war journalist.  He said the only people who do it, have no choice.  You don't choose that life, and it ruins your life.  You get PTSD and never see your family.  There is an addictive urge to it and it's hard to break away.

My hands are still not back all the way.  It's been 2 weeks since Rituxan.  They are a little better but everything feels rough and sand papery.  I pet my dogs face and his puppy ears aren't soft to me anymore.  I put conditioner in my hair and it doesn't seem to work, my hair feels like straw.  If I lightly stroke my fingers down my other hand, it's so sensitive it's painful.  At least they don't feel 4 inches too thick anymore.  And thankfully the rest of my body is back to normal.  There are other strange things from all the chemicals in my body.  My period hasn't started, it's a week late.  My hair is dried out.  Everything is just a little off.  I'm not complaining, just explaining in case someone else does this.  I"m off bread, sugar, dairy, and working up to 9 cups of veggies a day.  Trying to flush the system with vitamins for healing, like the wahl's book says.  I guess for right now, veggies are my purpose...

 

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Getting fun!

I just saw this video of my old band!  I miss those days!!!  I loved playing music so much! I loved having partners in crime!  Feels like a lifetime ago.

Last night I had an interactive dinner party to get me on the Wahl's diet.  It was awesome!  We got a bunch of ingredients out of the book and laid them all out on the table.  People came over and got to choose from a huge variety of stuff and cook whatever they wanted.  We had butternut squash soup, sweet potato fries, salad, grilled veggies, quinoa with tons of yummy stuff, buckwheat that was really good.  The dinner made me realize how much good food is on the diet and gave me so much encouragement.  I really believe I can do this.  The night also reminded me of how important it is to reach out to friends even when you don't feel like it.  Being around people is good for you!!  So if you're feeling down, pick up that phone and call or text someone.  Do it! Right Now!!

 

 

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Let Love In

Ok, so this one involves drugs (legal ones) religion, and kind of politics (not really).  Everything you don't want to talk about at the dinner table.  I'll probably offend someone but don't forget,    I love you :)  LET LOVE IN

So I alluded to taking some medical marijuana candy and learning some stuff the other day.  I figured I should let it all out and you can do with it what you will.  Bear with me and I promise next time I am predicting a lot of penis jokes and lots of whining about the Rituxin/Steroid infusion on tues, but who knows?  So trying not to sound like a 14 year old who got high for the first time, here is what I learned from the nibble of special caramel.

Everything we do, we do for love. The quest for more money. Trying to wear the coolest clothes. Trying to be seen. Being afraid to be seen. Wanting connection. Drinking alcohol to loosen our search. Taming our more wild urges.....or not. Finding spirituality.  

What we don't realize is that the energy of love is what the universe is made of.  Literally.  I saw it twice. Once, a hand grabbed the corner of reality and peeled it back revealing the underlying grid that is the energy of love that projects the hologram of reality. The grid is what holds up everything.  It's neon pink and yellow and the energy is what makes molecules stick together to form objects and makes your lungs move to take in the air. We call it love for lack of a better word but the energy is much bigger than romantic or human love. It's the love of the universe and creation and it makes things alive. 

The second time I saw it I ate the medical marijuana candy and lay down to close my eyes. I've been opening myself to prayer and meditation. People keep wanting me to pray to Jesus. I don't care what you call it, I'm not prejudiced and Jesus seems cool,  but I'm positive about the grid.  So I'd been praying to Jesus a couple times a day. Now I saw outer space and a huge blue and white light. It was sharp and jagged and pulsing and points could reach out and plug into something and make it alive.  I guess you would call it G-d.  I asked it if this is what they mean by Jesus? It said "Don't call me names"! HAHAHa I almost died laughing  It's bigger than a humanized form and bigger than a name and bigger than having an opinion about what we do or don't do.  The whole thing was hilarious to me.  That giant blue light blob was so impressive and powerful and nameless and just floating in space being pure creative force, it seemed really silly to try to put a face or a name over it.  

Then I heard that little voice of judgment and negativity that tries to run the show in my head sometimes and saw it for what it is. It's like a little whiny dude with a small penis who tries to over compensate by being cocky or acting entitled or like a brat.  Like Donald Trump.  Donald trump is the poor schlep that's inside our heads that bitches so much you can start believing him and forget that everything he says is bullshit and coming from fear, not love.  "America needs to embrace the violence"  Are you insane!  America needs to embrace each other and stop being assholes.  America needs to eat some pot candy and remember what love is.  America needs to quell the fear and realize that voice holds you back and hides the truth of your own power and beauty of the love grid. Once you realize who is doing the talking in there you can change it. Switch the channel to the idea man! Find the creator. Find Bill Nye or Georgia O'keef or Steve Irwin and let that guy (or gal) run the show for awhile.  How do I wake up the inventor?  Get the comedian talking?  Once I saw the different voices in there and how to change them I painted everything gold.  I played with the reality of visualization.  I am not a great visualizer.  It's hard for me to really see it. I'm more of a words person.  So really seeing the gold get painted over the black space blew my mind!  I decided to try to feel different emotions in the same way.  That's what acting is.  Being able to pull those feelings up and pluck them like a guitar or conduct them like an orchestra.  It's so intense when you actually do it. Not fake it. But physically pull those strings inside of you and freaking FEEL somethings you didn't a moment before.  You are playing yourself like an instrument. Then  I realized I've been shut down for a long time. Not allowing myself to reach those true feelings and not seeing them in others.  It's like Leonard Cohen says, "the crack in everything is how the light gets in".  So let's do like Nick Cave says and "Let Love In". 

So that was my weed lesson! hahaha And here is some Nick Cave.  I promise I haven't lost my mind.  

ps.  Bow is still in Georgia at a farm.  After my infusion on tues and the recovery I will figure out what is happening with the ride.  I can feel most of my body again.  It's a little easier to type also.  2 week after the steroids and rituxin and things are settling down in time for the next infusion.  My hands are the last thing but they get a tiny bit better every couple days.  I can drive now if I wear gloves, so I'm super fashionable! I can also go do stuff in the morning.  Which is great.  I still get really tired by the afternoon.  I also still enjoy only wearing black because I think it's funny to try to be goth since my body feels dead.   Goth chemo?  hahahaha Why is that funny to me? Tomorrow I might just say f**k it and try to go for a goth jog!  hehehe woohoo!

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Power thru

I miss Bow

I miss Bow

What do I want?  To help raise consciousness on the planet.  To create art.  How do you elevate consciousness in people?  By raising it in yourself.  How do you raise consciousness in yourself?  By being mindful?  By eating well and getting clear of chemicals and contaminates?  By researching and learning and watching The New Yorker tv show?  Can spreading my struggles with elevating myself and my struggles with changing my lifestyle help someone else in their journey?  Can sharing your life be art?

I had decided to take a short cut through a dirt road and give Bow a break and get off the highway.  Georgia dirt is red and beautiful.  Bow was doing his impression of the slowest walk ever.  There were swampy forests and overgrown fields, then a sewage treatment center with black water.  An abandoned semi-truck in the weeds.  Then a run down collapsing house with a collapsed barn off to the side.  Creepy vibes.  I try to get Bow to pick it up a little and get us out of there.  As we near the creepy house a red truck pulls out of the driveway.  The truck slowly drives towards us and I kick Bow to trot.  He doesn't.  The guy driving is giving me "hungry eyes" and he stops the truck and stares.  I don't understand why he doesn't keep going.  It's a wide road, shit we were just on the highway!  There is plenty of room to go.  Bow snail walks towards the truck as I am trying to get him to canter or at least trot.  It's soooo awkward!!  Bow tries to walk up to the drivers window!  Usually when we get up to the jeep we let Bow rest so I guess he thinks that since the truck has stopped he might get a treat.  I am creeped out by this guy and kicking and kissing and clucking and reaching for my reins to smack Bow on the butt to get him going.  The guy is scanning me up and down and I'm suddenly self conscious about my tight riding pants and wondering if my bra is showing.  Do men have to deal with this kind awkwardness if they dare to venture out on their own?  Of course not.  Men don't ever wonder if maybe they shouldn't have worn those pants, maybe it's their fault that someone is making them feel unsafe.  Every day almost a man tells me I am too pretty to be out here on my own, I am going to get raped.  What is wrong with the world that as a woman I should worry about being alone, outside, in the day time.  I think of all the people who begged me to get a gun for this trip.  What if I did have a gun?  What would that do?  I would probably be more nervous.  I don't want to use a gun on someone.  Would just seeing a gun deter a creep?  Or would that just challenge them more?  Wouldn't they just take it and use it on me?  Do I need to carry a gun to wear riding pants?  But I am moving  slowly towards him.  I smile awkwardly, acknowledging the situation.  No change in his face.  It's like in Austin Powers when the really slow zamboni or cement roller or whatever is threatening to run Austin over and he's screaming but it's a million miles away and going 1 mile an hour.  I started laughing at how absurd that moment was and how funny it is to be in the middle of nowhere creeping by a creeper!  Finally I used my spurs and we cantered off past the truck.  The dude stayed there and watched as we disappeared down the road.

Guess what!  The first infusion of Rituxan wasn't that bad!  All the worrying!  jeez Sometimes things are worse in your head and when you let them out, it's ok.  Am I a RItuxan fan?  Dare I say a good thing about western medicine?  Well, it's buying me time until I can get this nature stuff under control.  I guess we'll see if my lesions go away.  My next infusion is on the 21st. 

I have decided on a 3 prong approach to health.  

One.  Allopathic Medicine. Obviously the carpet bombing of my immune system I am currently applauding for the fact that it didn't make me sick.  Full-disclosure I'm exhausted.  I get heart racing and shortness of breath and my hands are still jacked but I was able to go to an art show and out to see music.  I also wake up every day with a sharp headache.  Yesterday I was like "Oh my god I am so hung over, what did I do?"  I was trying to remember if I did anything embarrassing or got in a fight or made out because I must've been so drunk!  Then I remembered I didn't drink anything and I was not partying, but I was on an IV machine and it's probably my little immune cells dying off and cluttering my head.  

Two.  Nature heals itself.  Terry Wahl's protocol.  A modified Paleo diet for autoimmune diseases.  Also a naturopath I talk to every couple weeks with a full regimen of herbs, teas, rules, etc.  Nothing like having someone to check in with and make sure you are following the rules!  I didn't follow the protocol on my own like I was planning and that probably contributed to this relapse so I am spending the money (it's less than I thought) on a Dr. to put me on a regimen and make me check in.  It's like being an addict in recovery.  I just watched the Resurrection of Jake the Snake.  My God!  That man had to work so hard to get off the drugs and alcohol and get healthy!  He's this big mushy tough guy who cries all the time.  I love it.  Nobody can do it alone.  Jake the Snake had Diamond Dallas Page!  He's so lucky!  Since I don't have DDP to get me off the bread and sugar I got Chantal the Naturopath.  Whateves.  I fully expect to Skype her with a piece of fried chicken in my mouth and a snickers bar in my hand and cry about just wanting one more glass (bottle) of wine.  I, of course, wanted to start immediately and as hard core as possible.  However, she says to wait til after the rituxan and not stress my body out so much all at one time.  Good call doc.  These head aches are killing me.

Three.  Psychological.  I've said before that I think that a lot of MS has a psychological component.  I've said that I have a war going on inside at all times.  I'm sure everyone does to some extent.  A friend recommended this therapist to me who used to be a cardiologist and a molecular biologist.  He started noticing that patients with the same physical ailments would complain of a lot of the same emotional issues.  He started seeing a psychological side to illnesses and changed his entire career to switch over and help emotionally.  He was just on a podcast with Pema Chodron (name drop!) I love Pema and anyone associated with her gets my vote.  So I signed up with him for an 8 session, 4 month, treatment program with a ton of homework.  I spoke with him for the first hour.  The first thing he said was "you have a war going on inside of you.  If you don't take care of it your body will paralyze you."  My thoughts exactly.  He said that first I learned to hide away, then I learned to rebel, then I learned to go adventure.  I'm in that cycle now.  Probably leaving the adventure and going into hiding.  My instinct now is to isolate and get better.  He is also really trying to tell me not to go back on the ride yet.  I could push through on pure will power and maybe finish.  But I wouldn't enjoy it and I could do permanent damage to my spine or brain.  He thinks that if I can hermit and get stronger that I could be more successful and make the ride what it was supposed to be in the first place. 

I am mortified at stopping my ride already.   I am mortified at the thought of staying gone even longer than just this month.  I miss taking care of my horse and sleeping in my camper.  If I don't get back out there soon I will get caught in the winter and probably won't finish anyway.  Every doctor I have is asking me to please choose something else to do.  What do I do?  Do I wait til next spring to leave again when I am stronger and healthier?  Do I choose another route?  Is there another way I can do something special to raise awareness and donations for MS?  Is there another way to get my identity back after all this disappointment?  Is there any way I won't feel like a quitter if I don't get back out there asap?

I have turned to art.  I've made a music video, I've been making songs, writing.  I have changed my style to suit my new moods, I dyed my hair.  I ordered some black gloves to wear since my hands bug me.  I built a bedouin tent out of all of my scarves and fabrics I could find.  I lay in my little fort and play music and have friends come see me in there.  I want to have a dinner party where everyone cooks something with items from the diet. What I want to do is get my camper from Georgia and find someone who has land in Malibu that will let me just camp alone and make art and do my diet and my psychological homework and do yoga.  I don't want to be in the city.  I feel like I have no purpose here.  I gotta figure out how to not go broke in this process.  How to keep expressing myself.  How to make myself stronger.  How to power through and be the woman I want to be.  Will blogging about the healing process be interesting to people if I'm not on a horse?  I am open to suggestions.  

Here is the music video I made 

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Yesterday/Downward Spirals

You're welcome for the Spanish lesson above :)

I feel like I haven't written in a long time.  Mostly because I have been in so many downward spirals and I don't want to be complaining all over the place.  How did my soul decide that this dimension is the one it should experience in more depth and detail?  It's like I got derailed.  I made a wrong turn back there and I want to turn around.  What the hell happened?  How did I f*** things up?  Did I not realize how fragile happiness is and took it for granted and spit in the face of the Luck Gods?  Then I'll get a moment of lightness and get mad at myself for being melodramatic, my symptoms and the infusion weren't that bad, a lot of MS patients have it A LOT worse!  Besides, I'm still Lucky!  I got a private room for my infusion, I have access to great doctors, I have amazing insurance.  I'm supposed to be inspiring!  Get it together!  But before I write I dive again into my spiral or take some medical marijuana candy,  more on that later...

Today I woke up singing opera style in Kermit's voice the song Yesterday.  I made coffee belting it out and feeling like maybe the steroid high finally kicked in and I got some energy.  I was thinking how ironic, or coincidental? it was that yesterday I was feeling like I have no future, no friends, no blah blah blah the last few days and now laughing about it singing Yesterday.  It was really funny!  Then I opened an email from another Long Rider and I burst into tears while singing and realized this roller coaster may not be completely over yet.  And So I Wait.

Want some science?  SoluMedrol.  Corticosteroid Infusion.  3days at 1 gram a day.  Stops a relapse in it's tracks.  Super powerful anti-inflammatory shutting down active lesions.  Very hard on your adrenals.  Should not be taken lightly but dramatically cuts down effects of relapse.  You can taste it as soon as the IV goes in.  Tastes like you are sucking on a penny.  I felt it burn through my veins the first time but this time they mixed it with more saline and I didn't feel anything.  Most people say they get all this energy from it and love the buzz getting laundry done, organizing, and other cracky behaviors but I slept for 30 hours.  That could also be all the ativan they gave me.  Another very strong anti anxiety medication.  Turns out I freak out at any medical procedure because I don't trust the medical industrial complex and have a healthy fear of dying, pain, and human error but rapid heart rates and shallow breathing are not good for healing so they just shut me down as soon as I walk in.  It's kind of pleasant.  I put on black clothes and red lipstick, go in, get 2 blankets and 3 pillows, pull out my watercolors, lay down and color until I pass out.

A little more science.  Rituxin or Rituximab.  Produced by a company called Genentech.  I am fairly certain Genentech was the name of the evil corporation in some scifi show I may have guest starred on.  The more I get into the medical world the more it is EXACTLY like a marvel comic with rock star doctors, crazy billionaires and mad scientists.  The world is your hologram and I am projecting some weird shit.  Sorry, carrying on.  Rituxin is a monoclonal antibody drug used for blood cancers.  It's a chemo.  An immunosuppressant that "acts on" (kills) half of your immune system.  The immune system is made of T cells and B cells.  All MS drugs have been acting on the T cells because that is generally what is though to be over reacting in our bodies.  So the fact that a B cell modulator is so effective on MS is changing the way scientists are thinking about MS.  But, Rituxin has been used to treat MS pretty successfully since 2008.  It stops lesions at 90%, stops relapses, and can help people with RRMS regain lost function.  Why isn't it used more you ask?  And why is there the exact same drug, also acting on the B cells coming out this year under the name Ocrelizumab?  Maybe because the patent on Rituximab is up this year and there would have been cheaper generic options made by other companies and people could actually get affordable help instead of paying $60,000 a year.  Just rumors...  So Ocrelizumab, the drama continues.  Ocrelizumab is the new brother of Rituxin, basically the exact same drug with a couple little twerks to up the patent and the price (hearsay!).  Rituxin though has been used in cancer for years. Then in Rheumatoid Arthritis, Lupus, MS, and other autoimmune diseases.  It's been safe and successful.  Ocrelizumab however seems to have a lot of instances of cancer.  Mostly breast cancer.  RItuxin didn't have a bunch of problems with cancer.  Would "They" really not allow a drug to be prescribed to patients facing disability because "They" couldn't make a big enough profit and then spend years and millions developing a slightly worse version that causes cancer and start pushing this super expensive evil twin on the frightened masses?  I don't know!  All I know is that all of this shit is over my head and is super scary and I have to make decisions that I am not educated enough to make and I tend to turn everything into super dramatic plot lines that start out for my own amusement until I start believing them.  I really know nothing about this except what I have read.

Ugh breakdown.  Point being I am getting an infusion of Rituxin.  My doctor is a rock star and got my insurance to cover it (I think).  In the words of my favorite MS blogger "Wheelchair Kamikazi" it's very "rogue" to prescribe Rituxin.  It's hard to get prescribed and hard to get approved.  It's still a cancer med, not an MS med.  It's still chemo.  It's still scary.  It's 2 infusions that might make me feel sick.  They are still killing half of my immune system.  I'm very sensitive to things in my body being killed off. It's unpleasant.  It feels like being poisoned, because you are!  Pointed Poisoning.  My new band name.  hehehe  Rituxin lasts 6 months.  Then you get it again.  Killing half your immune system.  Can I live indefinitely with half an immune system?  I think not.  I don't want to try.  I am very fond of my immune system, even though we are in an abusive relationship.  It hurts me but I'll always take it back.  It chops off my hands so I kill half of it and then we start again.  Eye for an eye and the world goes blind.  Or I lose feeling from the nipples down.   The infusion should get rid of this numbness and make me able to finish my ride.  Then my immune system and I can get a marriage counselor and try to learn to be more gentle with each other.  I won't kill it if it will stop eating my brain.

I want to go the natural route.  I don't want to be part of the system.  I want to believe I can be so strict on my diet and meditation that I can strangle my MS.  I want to have faith in a slow and deliberate process that I am in control of.  But to be super honest I don't think I have that much faith and I don't really like being in that much control.  I have tried to be all natural for my remedies before.  I have tried only using cranberry juice to cure a bladder infection after having a bunch of sex and after a week of pissing razor blades and sleeping in the bathtub I took my ass to the Dr. for some pills!  I want to be wholistic and peaceful!  But I am anxiety ridden and I just want to get back on my horse!  Literally and figuratively.  There is a battle inside of me all the time.  That's most likely what triggered my MS.  That's what I wanted to focus on during my ride.  OR rather Not focus on.  I just wanted a simple goal.  What does the next 15 miles look like.  How do I find water for my horse.  How do I keep safe.  How do I control this animal.  How do I stop focusing on myself and do something bigger than me?  How can I help people?  Can I just have a simple task, day in and day out, and accomplish it?  What is my identity if all I do is accomplish this small goal every day?  This 15 miles.  Just cover this 15 miles and keep everyone healthy and safe and fed.  But it isn't that simple, ever.  There are other people and their opinions.  There are people who want to scare you and your horse.  There are people who want to talk you out of your mission.  There is a disease that creeps up and slowly makes you numb until you can barely use your hands.  The universe does not conspire with you anymore.  But yesterday you were so lucky.  Yesterday you were pretty and successful and all your troubles seemed so far away.   Now I'm bloated and head achey and want to crawl into a hole.  But I am not ready to count the Yesterdays yet.  I am being dramatic again on my steroid roller coaster of mood swings.   I would rather count all the pleasure and laughing and add that up.  I'm glad that I can laugh through the hallways of the hospital, or get woken up out of a depression spiral by an interview with these guys who got so addicted to porn they couldn't get it up anymore and the one guy kept referring to his "limp noodle".  I laughed so hard that I finally got out of bed.  

I've been rambling and I don't know if I am melodramatic or repressing things or what.  But, I can barely feel my hands and I am getting exhausted at typing and fixing typos.  Existential feelings are exhausting.  I can't even fathom the future.  My chickens are destroying my hillside and aunt flo just got to town so I gotta go get some feminine products.  I'm slowly peaking out of my hole, like groundhog day.  Unless this Infusion next week scares me back inside!  My horse is safe and waiting and I really miss my little camper...

I'm super thankful for Nancy Davis and the racetoerasems people.  I wanted to support them with this ride and she has ended up helping me tremendously.  She called doctors on my behalf and got all this treatment stuff rolling.  They did the research on Rituxin and are prescribing it to me.  I hope people will start donating to them again once I get back out there because they are really going to find a cure.  She's like the beautiful heiress ring leader of medical geniuses and she will find a cure at all costs!  I can't think of anything better than contributing in any way I can. 

Remind me to tell you about my medical marijuana candies next time....

p.s.  right after I wrote about not having enough faith in natural curesand all of that I got a phone call from a woman who has MS and runs an animal sanctuary.  Me in the future?  She beat her MS without drugs, through diet and discipline and prayer.  She got my number from a friend who read my blog and contacted her.  The convo seemed like fate.  Seems crazy but I was seriously doubting and she called at exactly the right time.  I won't go on and on but I feel reinvigorated in the nature healing department and feel like I have a lot of meditation/thinking to do.  It's weird to figure out all this stuff out loud but hopefully if someone else is thinking about all this life/death, drugs/naturopath, faith/void kind of stuff then it can help?  Thanks Diane and Zac :)

 

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REALITY BITES aka MAN IN THE MIRROR

Sorry it's been awhile.  I finally got out there, on the road!  We were moving!  I crossed bridges, fought epic battles with Bow, spent hours supremely frustrated with him, met wonderful people who helped in so many ways.  About a week ago my stomach started feeling numb.  This has happened before to me.  In Alaska, camping.  Not sure what brought it on but it went away in a week or 2.  I kept riding on.  Bow and I came to bridge.  It was a small bridge with a swamp under it next to a cemetery.  The cement on the bridge was ridged, bumpy.  I think the lines were scaring him.  He got up to it and spazzed.  He turned to bolt.  I caught him and got him back around.  I wouldn't let him bolt so he tucked his back legs and started trying to run backwards.  I pulled his nose around to do circles and tried again.  This time he reared.  More circles.  I got off and led him over it to show him it was ok.  We walked across it over and over.  I got back on and he reared again.  I'm starting to lose my temper.  He is getting more worked up and more dangerous when he tries to bolt or rear.  I lunge him in circles across the bridge and back.  Cars keep coming and we have to stop and get off.  He gets part way across and turns again and runs.  I'm not wearing a helmet and we are on pavement.  Once he backs towards the edge of the bridge.  When he panics he doesn't see anything, he'll hurt us both.  More circles.  We get so heated and are fighting so much.  l'm whipping his butt and doing circles and screaming.  Everything I have been taught to do.  This lasted for 2 hours.  A man stopped and asked if he could help.  I said yes, ride him across the bridge.  He said if you can't then I can't.  Why not just quit.  I said I can't quit.  We have to get over this.  By this time I was exhausted and hyperventilating and Bow was all sweaty.  Jensen came to help and was able to ride him across.  The numbness started spreading but I kept riding.  We had a big thunderstorm day and slept all day listening to the rain.  It was beautiful.  The little kitty Hank, Chombly, and Stan over on his section of our little 14 ft camper.  If you told me I'd be living in a 14ft camper with a dude I'm not making out with and 2 animals who try to play chase in the little space I would have thought you were crazy, but oh how we project...

Anyway.  I thought the rest would do me good and I wanted to keep covering miles.  Then my hands started to go, and my knee, my foot.  We came to more bridges and he does a little rear or a little buck but I can get him across it now, he doesn't want to fight that much again.  Progress!  When I finally called the Nancy, the founder of the Race to Erase Ms, the charity I'm supporting, she gave me some tips to try like ice and aspirin and a doctors phone number.  I called him right away since it was getting hard to hold my reigns and the numbness was down my thighs and up to my nipples.  Numb thighs makes it hard to squeeze your horse!  And hard to walk to lead him.  Also "down there" was numb!  seriously, that is not ok!  I've heard that MS can mess up your sex life, but I didn't know your coo coo went numb!  Damn it!  Thankfully it's back now mostly but we really gotta get this handled.  Long story, still long, he said to wait the weekend in air conditioning and if it didn't settle down to come to LA because it's probably a new lesion on my spine.  I got a motel room and watched the entire new series Maria Bamford did!  Oh my god it's so good!  It's all about how she deals with being bi-polar.  She is sooo insane!  I started wondering if I was crazy?  How did I convince all these people to help me do something this crazy?!  Am I a train wreck?  No! hahaha I called Stan to have him bring the kitty to the room.  I needed another being in there to sleep on my face and remind me who I was and that the trip was real and I'm not crazy. I'm just numb and overly optimistic.  And I really hate air conditioning!

I'm in Los Angeles now.  It's hard to type because my hands are asleep.  I haven't written because I've been pretty sad.  I try to keep it positive, and I will!  But I worked so hard putting this trip together for over a year and I have so many people's support and there is no way it's over after 100 miles because my spine decided to quit on me!  I've gone back and forth on places I should have chosen instead, I should have done Iceland!  It's cooler there and there aren't crazy highways and carloads of gangster thugs that try to spook my horse by swerving and peeling out while we are on a bridge.  I should have chose Cuba!  It's tiny and they have horse lanes on the highway!  I would have been done in 3 months!  I chose America because I would be close to hospitals and my Dr.  So I guess I was smart a little.  

I am not quitting and this is not over.  I am going to get 3 days of Solumedrol infusion and rest for a couple more.  I have a sweet cowboy friend named Leroy Lane looking for a gaited horse who won't fight me every step of the way.  He said if he was a little younger he would just drop everything and come with me.  "Oh would we have a time" he said.   Also Louis Beasley, an amazing horseman who is watching Bow for me.  We'll see if we can find a horse who wants to be on the road.  The stress of fighting the whole way is too much.  He really doesn't want to be out there.  He wants to be with other horses, maybe in an arena running in circles.  The cowboys keep trying to get me to quit.  It's really sweet.  They are worried about me.  Yes, I wish I chose a more beautiful route.  Maybe a trail like the PCT or the Arizona trail.  But every trail has it's own issues.  If it isn't semi trucks, gangsters, creepy dudes in trucks on back roads, and a horse that doesn't want to be there, it's going to be rattle snakes, trees blocking trails, dehydration, or snow at high altitudes.  No one said this was going to be easy.  I didn't think I was going on a christmas vacation.  This is work.  And growth.  This is a mirror to see what's there and what I am made of.  And there is no way I am already quitting.  But I will rest for a week and get a massage ;)

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Day 1

I officially left for my ride on May 8th 2016.  Sunday.  Mother's day.  Interesting...

I was at a trainers, Terry Layer, and she was telling me that a horse has a mentality of a 7 year old.  I am his mother now.  I need to act like one.  I am not his friend.  If I am not strict and firm he will hurt himself or get us into trouble.  I've been talking about wanting kids lately and here I am, on mothers day, riding my 7 year old out of the city.

Here we go!  We left Savannah! Finally! hahaha  After trips to trainers, sleeping in a field for weeks, and practice trips on highways....we finally left.  I took Bow into the city to stay at the Savannah Historic Carriage Tour Company so he could get used to the city noises.  Lucky for us his stall was right near some train tracks.  Desensitization lesson for free!  He got to hear trains go by every few hours which will hopefully keep me from getting bolted on when we are out in the world by some tracks.  We were walking by a busy street and a city bus came by and woohoo!  He jumped out of the way and started prancing around.  Prancing is fine as long as it's not into traffic.  So, we went to a busy corner and sat there for awhile and let buses go by from every direction.  He calmed down after awhile and got used to it.  Poor guy, used to the quiet country and then dropped in the city!  

I was sitting by his stall at the carriage company and this girl came up and asked why there was a tiny horse at the carriage company.  Bow is definitely not tiny.  But compared to the huge draft horses pulling carriages he seems little.  We started talking and I was saying what I was doing and how Bow was having a hard time in the city and I was planning my escape from Savannah at 6 am on a sunday, mother's day, to avoid traffic.  She jumped and said she was coming and she would bring friends.  Her name is Jensen James.  She brought her 10 yr old daughter, Scout.  She also brought her friend Allison Smith, her students Cheyenne Ryan and Emily Briscoe.  Jensen is their riding instructor and horse trainer.  How lucky am I?  A whole crew of ladies and horses.  We took over an entire lane everywhere we went.  We galloped around in Forsyth Park and friends met us by the fountain to say good bye.  Bow was so happy to lead the group of ladies.  When we got to the outskirts of the city on a back road there was a train stopped on the tracks and semi trucks coming.  The horses didn't even care!  We rode up and down the tracks and through the traffic and had the trucks honk their horns.  I never thought my lonely ride was going to be so much fun!  At the end of the day we made it to a pond and the girls rode the horses bareback into the water.  Bow went swimming on his own.  It was magic.

Cue day 2.  Everyone is gone.  Bow is the only horse.  He is tired from the day before and doesn't want to leave the pasture.  He won't walk in a straight line.  He won't pay attention.  It's already hot.  His ears are straight up towards the traffic noises.  It's Monday morning and rush hour.  No more holiday.  Trucks are rushing around 8 in a row, not letting up.  We get stuck in a cross walk.  He starts backing up scared of a truck coming towards us but there is a truck behind us as well.  I can't get him to stand still.  He is throwing his head.  The truckers look worried and then keep on trucking.  We run across the street at the light.  I get off and lead him, feeling more secure on the ground.  Big mistake.  He thinks I bailed on him.  I guess I did.  I didn't trust him.  There is no shoulder to ride on and the trucks are on the white line with us.  He keeps walking sideways with his butt in the road.  I can't keep going like this.  I try to let him rest and eat by the road to get used to being near trucks.  Wrong move again.  Now he is just food obsessed.  I can't get him across the street.  He jerks away and throws his head in the middle of the road with trucks rushing at us.  I am screaming and pulling and he won't come so I run at him and hit him in the chest to push him back so we won't get hit.  I climb back on him and kick him with my spurs forcing him to run.  We carry on like this for the most miserable, hot, and terrifying 8 miles.  There is black mud that sucks a horses legs in and can break them, big creeks that force us back into traffic, and he is not minding me at all.  I cried 3 times.  I finally found a clearing off the road and tied him to a tree so I wouldn't beat him and sat down to meditate and calm myself down. My feet were vibrating. Then a green jeep pulls up. Then a red truck.  Then my jeep.  All at the same time! hahaha  The Mayor of the town I was riding through called Jensen and told her I was having a really hard time with my horse.  He brought me some water and cookies.  Jensen told me there was a place to camp another mile up, did I want a ride?  No way am I taking a ride.  I'm finishing this damn day.  I made it to where I was supposed to make it that day, just very frazzled.  I told her the issue and she offered to take me to her house for a few days and train us.  

We have been here for three days.  She is awesome.  Bow has been rearing up when we try to load him into the trailer.  He actually reared so hard he fell over backwards.  After working with her for a few days she can point at the trailer and say "Get in!" and he gets in by himself.  He also got so scared of a plastic bag blowing in the wind that he backed into a busy street.  She tied plastic bags all over him and made him ride around with them all flapping as she was cracking a whip around his head and on the ground.   So she gave me some tips on what to do if he is acting up and not minding.  She whipped us into shape and we are going to the exact spot where we left a few days ago.  She literally gave me a whip.  I am going to cross that huge bridge that I missed the other day while cracking a whip! haha!  She told me to sing to him.  Another woman, Sea G. Rhyder, a lady long rider from the LongRiders Guild, also told me to sing to him.  When a scary truck comes to just laugh really loud and tell them to honk their horn!  Apparently Bow relaxes when I act like a crazy person.  So be it. 

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Leaving on a midnight train to Georgia

Oh good Lord!  The emotions! This is gonna be a big one.  First of all, Bow is not good in traffic.  I thought he was going to be fine!  He didn't seem spooky.  But, he is terrified.  I don't know if it's something I'm doing, if his leg still hurts and it's making him spooky, or if he just doesn't like being alone.  One thing is for sure, being on the back of a 1200lb ball of terror is no fun.  We rode 13 frustrating miles yesterday with a bunch of spooks and high nerves.  A cattle man is coming out later today to talk to me about what we can do to get me on the road safely.  Starting in a city is a big deal for a spooky farm horse.  

I can say that I am learning a lot about myself already.  I have acted a lot like Bow in my past.  Full of anxiety, ready to bolt and run down whoever is in my way.  Not on purpose, just out of fear.  This trip is fitting in that way.  Being responsible for something that is more scared than I, gives me a kind of courage.  Well, I get courageous after the feeling of wanting to bolt subsides.  We need to take things slow.  If we can't leave on time, so be it.  I can see how frustrating and scary I have been though.  When I just want to ride a long and he is freaking out about something that I can't even imagine as being scary.  It's no fun.  It's actually the opposite.  Then his fear makes me afraid.  What happens when you have two spooky horses together?  ughSo I guess I'll take this time to formally apologize to anyone I have accidentally hurt while trying to jump away from a "speeding truck".  The only thing to do is to learn and to grow, hoping that one day I'll be like the bombproof, traffic-proof, warrior horse I am dreaming of.  

Dr. Gabor Mate' is a therapist who believes that MS is brought on by emotional stress and anxiety.  I have dealt with anxiety my whole life.  I think I had my first panic attack at 18 while traveling alone through Asia.  Sure that would make any kid anxious.  It was also a lot of fun!  But I am talking about panic attacks that are like bad acid trips.  The walls grow, I feel like I am floating in the world with nothing tethering me down thinking anyone near could and possibly would kill me.  These panic attacks continued for years.  Sometimes waking me up in the middle of the night, in my safe secure home, with all of my nerves on fire and my ears ringing.  It's not unlike the MS symptoms I get, just with a psychological twist.  I truly believe that my MS is emotionally and anxiety driven.  It's a wholistic viewpoint and I think meditation is a key to help.  So there, I have learned so much and I haven't even officially left yet!   I'm glad I sold my car and got a train to Georgia.

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We can be Heroes!

I had a dream last night that David Bowie was my taxi driver.  I was depressed in the back seat and he turned around and started talking to me.  I was trying to act like it was no big deal that he was David Bowie.  He was full of caring and wisdom.  He was beautiful.  I told him that I understood him wanting to drive a taxi and talk to people and see the city because I had wanted to do it too.  But that I wanted to drive for Uber! haha With Uber you pick when you work and there aren't as many rules, you can go home whenever you want. HA!! I told David Bowie he should drive Uber instead of a Taxi!  Then he pulled into a little streetside restaurant and asked if I wanted to hang out.  It was a date all of a sudden.  He said he was married but they were open and would I be his girlfriend, would I like to meet his wife?  I was super down to be in David Bowies relationship and we totally started making out! hahahaha

I am outside Savannah in a tiny farm community called Millen, Georgia.  I am camping by a heavenly pond in a field and Bow is tied on a highline between two trees.  I met Jason, he owns Land and Rivers real estate, last year on a trip to Savannah.  I emailed and asked if I could camp by his pond for a couple weeks to start my trip and he said yes.  It's heaven.  I don't want to leave!  I could live here forever with my horse and my dog.  Only problem right now is that my horse is lame.  His back leg is limping.  He was tied to a post and I was letting him graze on a long rope.  I was right there watching to see if he could figure out how to be on a long line.  It got wrapped up once and I got it undone.  He seemed like he was figuring it out.  He got wrapped up again, and we undid it.  The third time I was over by the pond getting water.  He got his back leg wrapped up and he panicked.  He started kicking and freaking out.  I ran over and got him out of it but when he was kicking he strained a muscle.  I feel terrible.  The vet, Dr. Pritchard, came and he said it isn't bad but I can't ride him for 3 more days.  It's been 3 days rest since we got here.  I hate that I let that happen.  Also, I really need to be working him out and getting him used to being in the city.  So we have a little set back.  

In better news!  We got a starting place in Savannah.  Old Savannah Historic Horse Tours!  We saw a horse and carriage on the street and asked them if we could stay at there barn and start our ride there.  Feels so good to have it set.  May 1st as long as Bow can handle the noise of the city, we will be good.  Please David Bowie!!  Help us start off right!!  I must find some gold eyeshadow!

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Nowata!!

Have you ever seen the movie Fried Green Tomatoes?  Whenever Kathy Bates wants to do something crazy she screams Towanda!  Towanda empowers her and Idgie, the other character she learned it from.  Well my scream is gonna be Nowata! haha  I am in Nowata, Oklahoma and it's being so good to me.  A lot of stuff was really not going as I had hoped.  I was having a hard time finding a horse, the RV turned out to not be what I thought, I was having a hard time being healthy, and I was dealing with family stuff.  After about 3 anxiety attacks I moved on to Nowata.  I met some really generous and kind people.  Trent and Mindy Watson and their girls Logan and Murphy.  I met Trent through Brandi in Coffeyville.  Brandi is a massage therapist and just a sweet funny girl.  She helped me find a horse and drove all over the place even on a day when a tornado was coming!  It was crazy outside, she drove up to meet me and rolled down the window.  She had her baby in the seat next to her and was screaming over thunder "We aren't gonna get hit by a tornado are we?"  "I don't think so!" I said "but you know what to do if you see one coming right?"  "Yeah!  Lay in the ditch!" we yelled at the same time and laughed because we were nervous.  We rode the horse in the rain that day which wasn't really fair for the horse because he was so nervous I didn't want him but that was probably just because of the storm.  On another day she walked up in sandals with her baby on her hip.  "Hold him for a minute" she passed him to a friend, took off her shoes and jumped on a roping horse.  She really knows what she's doing.  So she asked Trent and he took us to see Bow.  He is not the best trained horse we saw but he is the prettiest! To be honest I don't want my horse to stop and turn on a dime, I would probably go flying off.  He's great for what I need him to do and he's gonna be a good friend.

Back to Nowata.  Trent offered to help train my new horse to get him ready for the ride.  He said the horse could even stay at his house with his other horses.  Him and Mindy even offered to drive Bow out to Georgia in their big rig just for the gas money.  At first I couldn't figure it out!  What are they getting out of helping me?  I keep asking, are you sure I don't owe you money?  They bring my horse with them to the local arena where they have small rodeos and they give me advice in between hauling their steers and riding their own horses.  Their daughters are amazing horse people.  Logan is 13 and has a broken foot.  She's in a cast and refuses to let anyone help her and won't stop riding her horse.  She was running barrels in a cast!  Murphy is 10 and the fastest barrel racer I have ever seen. Mind you, I haven't seen a lot of barrel racing!  But she is graceful and she really flies.  I feel like I have been let into this cool little club.  I was riding the other day on their land and they needed to round up their steers for a rodeo.  I followed them out and actually got to help round them up!  It was so fun.  I've never actually used a horse for a "job" and it was amazing.  I feel so lucky to get to experience these other lives.  

I also met Kim and Lon.  They are a beautiful couple.  They are like surrogate parents.  They gave me a jar of home made beef stew for the road.  Lon let us borrow a ton of power tools to fix up this run down camper that I bought in a panic off Ebay.  They let us use their truck and invited us to their house for bar-b-que.  They also offered to donate an equine massage for Bow!  Such kind people out here!  These are just a few of the strangers who I have met in my short time here and I am so grateful. 

Spending this time getting ready and meeting kind and generous people has given me strength.  It has allowed this plan I have to move forward.  I wouldn't be doing it without all the people who have helped me.  People from all over have written me beautiful letters, given donations, given advice, time, energy, and support.  All of that support and love I am summoning into the word NOWATA!! hahahaha  My Fried Green Tomatoes battle cry!  I leave for Georgia in a week!

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Stan's Here!

Yeah!  My buddy Stan got here!  He is going to help me film video blogs and he's going to drive the Jeep with the feed and water for the horses while I ride.  I am so excited.  We already went to Tulsa and traded in my car for a Jeep!  Problem 1. check.  We were driving back last night and the sky was orange off in the distance.  I was explaining to Stan about how the farmers have been burning their fields lately to make room for new growth and all that.  So we decided to go find the fire!  It was so fun.  We took the Jeep down all these crazy eerie dirt roads following the orange glow in the sky until we finally crested a little hill and there it was.  Acres and acres and acres of burning grass.  We got right next to it and turned off the lights.  We got out to film.  The smoke was really strong and probably not good for us.  A truck pulling a trailer with water and a guy standing in the back drove by us.  They were keeping an eye on the fire and probably thought we were dorks for being out there taking pictures but it was so beautiful.  We made some videos about how to tie a high line and hitch a horse to a tree.  Soon we will post videos and everyone will know how to tie a cow hitch!  It's so nice to have a partner!

I haven't given an MS update in awhile.  Basically because I have been fine!  I have been taking dried Cordyceps Mushrooms powder.  It's the mushroom that the medicine Gilenya is made out of.  I figured if that is the active ingredient in one of the strongest MS medicines then it might help.  Not saying anyone should try this but I am not on medicine right now so I am doing what I can.  I am also taking turmeric powder with black pepper.  Curcumin is the active ingredient in Turmeric and a super potent anti-inflammatory.  I just make a smoothy in the morning and dump in the powders.  I am still taking liquid D3 and liquid Methyl B12.  I think liquids get absorbed better.  I am taking a lot of other pill supplements.  I worry that I'll overload and just pee them out so I try to space them out through out the day.  Somedays I am better at all this than others.  It's a learning curve.   I am still having a hard time changing my diet.  We eat steak out here!  haha  I'm trying not to put too much pressure on myself while I am here and just get myself on the road.  I am confident that once I am on the road and have my routine it'll be easier to eat an anti inflammatory simple diet (because that's all I am going to take with me!)  

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In Beauty May I Walk

In Beauty may I walk.
All day long may I walk.
Through the returning seasons may I walk.
On the trail marked with pollen may I walk.
With grasshoppers about my feet may I walk.
With dew about my feet may I walk.
With Beauty may I walk.
With Beauty before me, may I walk.
With Beauty behind me, may I walk.
With Beauty above me, may I walk.
With Beauty below me, may I walk.            
With Beauty all around me, may I walk.
In old age wandering on a trail of Beauty,
lively , may I walk.
In old age wandering on a trail of Beauty,
living again, may I walk.
It is finished in Beauty.
It is finished in Beauty.

traditional Navajo Prayer Beauty Way

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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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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

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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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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.

 

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