Sunday, September 28, 2008

I just got back from Boston where I attended the advocates conference with Biogen Idec.
I am a patient advocate for Tysabri. I had such a good time. I met so many wonderful people who inspired me so much. I met people who ran marathans, triathlons and a man training for an iron man competition. All of these people have MS. All of these people are so positive. I often feel like I surround myself with so many negative people, I really needed this boost of positive energy. I came home with a longer "to do" list. I finally found some people who share my philosphy of not giving up. I was proud of myself for traveling alone. I also visited one more state I had not been to. My goal is to visit all 50 states.
The Biogen staff was wonderful and the event was packed with information and events. Although I had to leave early (weather and flight problems) I had such a great time. I can't wait til next year.

Tuesday, September 23, 2008

Tomorrow I leave for Boston. I will be attending the Advocates Conference with Biogen Idec.
I became a Tysabri advocate with them late last year so this is my first conference. I am looking forward to it.
I will be traveling by myself, which is always scary when you have a disability. Although this is not the first time I have traveled by myself. I traveled on a regular basis when I worked in sales so I know my way around the airports and what to do if I miss my connection but it is a little more daunting because I have a hard time managing my suitcase, a cane, etc. And then my biggest fear is that the airline loses my walker. Well, there is nothing I can do at this point.
I have my IPOD with me so if anything hiccups you'll find me sitting in a corner listening to Josh Groban trying to relax.

Friday, September 19, 2008

I'm back.. I've had way too many things going on at once. And as we all know multi tasking is not as easy as it once was when you have MS.
Last week, I became a hermit. The week of Sept. 11 is always a difficult time for me. I tried very hard not to watch TV, listen to the radio or go on the internet. But, I had so many calls from people checking on me so it was hard to not think about it. The good thing is that every year it does get easier to deal with. I just hate answering that question " where were you on Sept. 11? "
Grrrrr !! In case anybody doesn't know I had a front row seat.

My support group met Wednesday. We didn't have a speaker. We just talked and shared. It was actually a very good meeting. The negative Nellies didn't show up and the constant interupters weren't there either so everybody respected each other and was able to share.

Tuesday, September 9, 2008

6:30 am and I awakened to the sound of the construction happening on my street. I woke up and thought I was back in California experiencing an earthquake. The bed was moving, the windows rattling and of course, the sound of heavy equipment beeping and pounding.
They are attempting to update the sewer system and ultimately widen the street. Last year they repaced the water main. Now, why they didn't do both projects at once is beyond me. I don't run the city, at least not yet. 6:30 am is a little early to start this project. I realize that most people work but it is still too early.
I am going to attempt to run away from home for a little while today. The Handi Van is coming to get me about 11:30. I have been assured they will be able to get in and out of my street. The question is how far will I have to walk? And what happens if I fall? The Handi Van has been so cooperative. I know my street is not the only one under construction. The drivers are all so helpful and I appreciate their assistance and kindness. County employees that think outside the box. What a concept. Thanks guys, I really appreciate your help.

Tuesday, September 2, 2008

As you can tell by the name of this blog "Navigating the Journey of MS" we are boaters.
We took the boat out yesterday with some friends and took a ride across the lake and down the river to a restaurant for lunch. We have had an awful boating season. In June we had the flood and there was so much debris in the lake we were afraid to take it out for fear we would hit a log. We waited a long time before finally taking it out only to hit something and spin the prop.
After we got it repaired we ran into weather problems. When Mark was in town, it was raining or we had other plans and when we had beautiful weather Mark was out of town.
So Labor Day was a day long overdue. It was 90 degrees and well, we know what MS does in the heat. I actually lasted longer than Mark thought I would but when I crashed, I crashed. After we docked the boat, he took me home to the comfort of my a/c. I felt dehydrated so I ate a peach and curled up on the couch and checked on Hurricane Gustav.
I was so proud of myself for pacing myself and lasting as long as I did under such extreme weather conditions. I am so glad we finally had a nice boat day this season and we got to share it with friends. I am in a little discomfort today because I guess I missed with the suntan lotion. My knee caps are bright red !! Oops! I can't wait for next weekend !