Monday, August 31, 2009

Neuro visit this week.

Well, Weds. is the day I see my Neurologist following the fiasco at UCLA. (To which I repeat I shall NEVER return to UCLA. They may be good, but they have grown large enough that the consulting specialist makes you wait 4.5 HOURS after your scheduled appointment to see you then doesn't bother to read your chart before they see you (or they would already know the answers to the questions they are asking). Going to be interesting to see what he says. He sent me there specifically to get the Tysabri referral, then they inform me they aren't in the "Touch Program" so they can't do that. Another waste of time as now I know he'll be sending me somewhere else. I've only been waiting FOUR MONTHS to get on it. go figure.

I've been doing pretty well. At least that's what I tell myself. My biggest challenge is pain. My legs hurt constantly. They feel very heavy and ache, usually waking me several times throughout the night. I have no stamina and forget about being able to be productive for any length of time. My fatigue level is unbelievable. I had my B12 level checked and it's fine. I'm also taking great vitamins, so it's all about the MS.

I'm traveling back to Texas in less than two weeks to have my machine "recalibrated". I'm only staying a week thi time. Wish I could stay longer but a week is all I can do this time around. I'm really looking forward to going. When the machine is calibrated exactly to my body the results are nothing short of remarkable.
I've included the link so you can go check out Dr. Rhodes' web site. The video for his MS work is also on youtube (Can you figure out which patient I am)?

Since I've had so much free time on my hands I've created a youtube site for our dog. Search MegaToonie and she'll pop up. I'm going to try to get more video of her up soon, but she's such a momma's monster that when see shes me, she's at my feet. Not much video to get when she's like that!

Now that blogger has changed it's posting box, where is spellcheck??

Hope you all are doing well. If any of you are on Twitter, I'm there as well code name....Journey with MS.

Wednesday, August 26, 2009

What would you change?

While my mom was here we had a discussion about what things we would change in our lives, both pasr and present. I came to the conclusion that I wouldn't change many things. I might change things as far as how other peoples actions have changed my life, but not the things that I have done. Even marrying my Ex. If I hadn't married him, I wouldn't have my wonderful children and grandkids.

I could have done without losing my hearing. THAT I would change. Of course, my life would be very different changing just that. I wouldn't have been working in the prison system. I wouldn't have fallen last year (I'm still off work over it).  Just changing that would have a dramatic impact in my life.

I would also change my MS. I could do without it. Not having MS would drastically change my life. Imagine, no more wheelchairs, slide boards, falling, shots everyday and my least favorite, Optic Neuritis. Not being dependent on someone else for everything. To dance again with my husband. Such a simply act, yet so meaningful.

So, what would you change if you could?

Monday, August 24, 2009

Back to Texas I plan to go...

It's a beautiful day outside. Hot, but beautiful. Too hot for me to be out in. Not only is it too hot, but I feel to crummy to be out anyway. I'm tired from overdoing, my back is killing me from my work injury last year that no one to this day has seen fit to fix and my frustration level is high because of all of the above with MS and difficulty hearing being thrown in. Enough to make one not want to get out of bed in the morning.

As I type this I sit here with a hot pack on my back, my STS machine running, drinking ginger and wearing a magnetic bracelet. If that doesn't show a degree of desperation I don't know what does. I'm tired of being tired, tired of being in pain and beyond tired of being an MSer.

I'm planning a return trip to Texas some time next month. If I could go tomorrow I would. Just to get rid of the back pain if nothing else. Right now my life consists of hot pads being microwaved every thirty minutes to keep the pain level as tolerable as I can stand it. Working on the MS issues is secondary at this point. I now have a deep appreciation for those who live with chronic pain year after year.

I think I got the blog issues fixed. Hopefully, comments will again be able to be received.

Hope your all well.

Sunday, August 23, 2009

I'm baaaack!

I think I FINALLY fixed all the problems with my blog. So now it's time the catch up on all the updates!

As you know I had an appointment at UCLA. Which was a bust. My Neurologist sent me there to get the referral for Tysabri so we could get everything started. Well, after waiting 4.5 HOURS past my scheduled appointment time, we were informed that UCLA is NOT a Touch approved center. (The Touch program is the program that all prescribing physicians and infusion centers MUST belong to in order to be able to prescribe and/or infuse Tyabri). Who would have thought UCLA wouldn't be an authorized prescriber. So in effect it was a waste of time for me personally.

I did however, learn that they ARE discovering the subgroups of MS. This means they will be able to identify which treatment works better with each subgroup. So instead of "cookie cutter" treatment, we will receive the treatment that is best for us. So, I was tested for the subgroup they have identified to see if I'm in that group. I should have the results next week.

My mom just left for her trip home. My husband had literally left with her yesterday to take her to the airport when we found out my brother was in the hospital with kidney stones and unable to pass them (still the current situation). Hence, they turned around, we went to the hospital and she stayed and extra day.

I had a wonderful visit with my mom. Actually gave me a few interesting topics for posts which I'll be entering over the next few days.

I hope your all well. I'm hanging in there. Still adjusting to the power chair. It's not quite my friend yet, but I know it will be. It just takes time.

Saturday, August 22, 2009

No topic

It's been a bit since I've blogged. My mom is here for a visit from Missouri and it's been great. I have so many thoughts to blog about but it will have to wait until tomorrow. Hope your all well!

Monday, August 17, 2009 I'm frustrated.

I changed to yet ANOTHER blogger template to see if I could get anything back...and I did. However, instead of getting a date posted I'm getting this "Undefined, undefined" garbage. Any ideas how to get rid of it?


I decided to go back to the "Blogger" template because I was having too many problems with the other 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 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 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).

Saturday, August 15, 2009

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.

Friday, August 14, 2009

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.

Sunday, August 09, 2009

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!

Saturday, August 01, 2009

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 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!