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 :)