ARGH

I decided to go back to the "Blogger" template because I was having too many problems with the other one......now I lost everything I posted. Thankfully, I printed out the first year of blogs, so I've really only lost 5 or 6 posts. You'd think blogger could do a better job with 1. offering better, creative templates and 2. not losing posts in the transfer, but hey what do I know, I'm just a regular blogger! ARGH

Stress and MS.

We all know that stress plays a major part in the battle we fight everyday with our MS. Good stress, bad stress, heat stress.....you name any kind of "stress" out there. I'm always looking for better ways to cope with the stress, because we can't always avoid it.

Someone sent me a link http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-stress-management regarding stress and MS. It's good reading and has some great points.

When you feel your stress level is building up, how do you deal with it ? (Could be another poll idea for Tara).

Mom's coming for a visit.......

Well, now that a few days have passed I'm not so pissed off about UCLA. I'll never go back there, but the red haze is no longer clouding my vision. LOL.

I'm back to "It is what it is". God has is plan, I'm just along for the ride. Right now the ride seems to be a raging river and I feel like I'm barely keeping my balance in the raft. Thank goodness the rest of my life, while not perfect is pretty darn good. It has it's currents, but it's not a raging river.

Mom arrives Tuesday from Missouri for a visit. Why is it that it doesn't matter how old we are, we still strive for parental approval. I'm making my husband crazy making sure the house is picked up, the walls clean and pictures hung. In reality my mother wouldn't care, but I do. Hence the craziness that will occur between now and Mom's arrival.

I haven't seen my mom since my wedding last April. I hate the fact that my family is so spread out. Missouri, Florida, Kentucky, California. My brother and I are the last California hold outs and I doubt either of us will stay here when we retire.

I tried to do some research on the net regarding studies on MS subgroups and couldn't find anything. I'll try to dig a bit deeper to see if I can find anything. If I do I'll post it here.

I'm adjusting the the chair. It's incredibly responsive, so I'm learning just how much touch is required to maneuver it. It's really easy to over correct. That's where I get myself into trouble. I'm coming to like the chair, although I feel more comfortable in my manual. Probably because I'm so used to it. I sit in it and it's like home, where the power chair intimidates me a little. Imagine. Being intimidated by a stupid chair. Geesh. I really think that with being totally comfortable with the power chair requires more acceptance of my disease progression than I'm able to pull off.....yet.

Frustration and Antibodies

I haven't blogged in a few days because I simply had too much going on. I had an appointment at UCLA yesterday. I can not believe how we were treated. We will NEVER go back to UCLA under any circumstances.

First we waited FOUR AND A HALF HOURS after my scheduled appointed before we were seen. Then, it was clear the physician I saw, while she was very knowledgeable hadn't read my chart.

I was sent to UCLA strictly for an evaluation for Tysabri. The MD informed me that they are NOT affiliated with the Tysabri Touch program. In other words the appointment for me, was a complete waste of time.

However, I did learn a few things that I will pass on. I learned that my right eye has been permanently damaged because of the bought of optic neuritis I've had over the past year. Wonderful.

I also learned that the research they are doing with MS is not only geared to finding a cure, but to identify the different TYPES of MS. I'm not talking about RRMS, SPMS etc. They are working on actually identifying sub groups so they can focus on what treatment works best for that sub group.

How they are identifying the subgroups is through testing for specific antibodies. Pretty interesting . It means that they are identifying that there is commonalty between MS patients besides just the diagnosis. I will tell you more as I learn more about it.

Year two. August 9th

Haven't blogged lately as we were away on vacation. While I could have blogged, (I never travel without my laptop), I decided to take a break. No blogging, no cell phone, no TV. It was absolute bliss. If I can figure out HOW, I'll post some video I took of the ranch. I got a new Flip Video (Which is awesome) for the trip and had a lot of fun zipping around the ranch in my scooter shooting it.

Today begins year two of blogging.

I've been doing pretty well with the MS lately, all things considered. I'm only having two side effects from the Copaxone: Site reactions with bruising and joint pain. The site reactions are no big deal. I can deal with that as well as the awful burning that follows the injection. (Feels like I was bit by fire ants). The joint pain may be a deal breaker. The joints in my hands hurt so badly it hurts to try and grasp anything and one finger is so painful it hurts to move it at all.

As far as MS symptoms, I've developed this "Hum" in my left heel and fingers. Hum is the best way I can describe it. It's a very weird feeling that comes and goes. It's not painful in the least, but it's annoying when it goes on for awhile.

I go to UCLA on Wednesday to see if I meet the criteria for Tysabri infusion. It will also be interesting to see if they take me off of any of my current medications. I'm on so many of them. At least I'm done with the steroids. The last dose was August 2nd. I won't do them again unless my eyes are effected. I was on the steroids for over 3 months. I gained so much weight it's beyond pathetic, which in turn makes me feel terrible about myself. I know it will come off with time, so I'm hanging in there with that issue.

My power wheelchair should be ready for delivery. They expected it to come in last week, so I'll be calling first thing in the morning to see if they have it.

Well that's all for now, I need to catch up on reading your blogs to see what you each have been up to over the past week!

New Year

It seems appropriate some how that at the same time I'm starting year two with a new blog, I'm also starting on a new injection, Copaxone. I was on Copaxone before for about 18 months until it obviously stopped working for me last year. However, I just can't tolerate the side effects of the Rebif. I had forgotten how bloody much this injection burns, and I'm not just taking when you inject. I'm talking for 10 minutes afterwards as well. Crap. I hope it eases over time...to say just 5 minutes. Geesh.

Other wise things are about the same. Left leg doesn't want to work, eyes don't want to work, ears don't work and my back gives me constant pain. Gee....I sound like quite the pick don't I?

Fortunately, I go back to UCLA the week after I return from vacation (we leave tomorrow YIPPEE). I'm hoping they will take me off at least half the drugs I'm on. I'm seeing them for the Tysarbi program to see if I qualify. I'm praying that I do. While part of the whole Tysarbi business scares the crap out of me I know that if it works, it may be my last hope to stop further progression. Besides, statistically the odds of having a complication worse than an IV site problem is in my favor. I'm at the piont I just want to do it and get it done.

Well everyone, have a wonderful weekend. Read a book for me Webster!