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Rituximab

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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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