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 :)