Wednesday, February 27, 2008

Hitting the Slopes

We're off to hit the slopes at Breckenridge. Our whole family will go (hubbie and daughter), plus my brother, his wife, and their 2 little kids. I hope this will be fun! I wish I could do the blue slope off tether--it's a mental thing--can't get over it. This week I had my eyes dilated--passed with flying colors. Next week I have 2 dr appts and then I have to make...........the Tysabri decision. But this weekend is all about fun! :)

Saturday, February 23, 2008


I've been thinking--dangerous! :)

Way before my daughter was born, my MS was out of control. At that time I looked into getting a stem cell transplant and was really close to getting one. At the same time, I always wanted a child and knew having a stem cell transplant would probably make that impossible. So strange as it may be, we were trying to get pregnant while this stem cell transplant possibility was moving forward. In June of 2002, my grandma died at age 99. Around that same time I got pregnant, finding out right after her memorial in July. My daughter was born 3 days shy of what would have been my grandma's 100th birthday. So there was the answer--no stem cell transplant, because I got the greatest gift of all--a child.

My daughter just turned 5 this past week--time flies! Now I would never consider a transplant because of the risk, because now I have my daughter, and somehow I viewed getting pregnant as a sign from God on what to do. Down the Tysabri path I went, with all signs pointing toward this is the thing to do, until the small melanoma article. And it may be coincidental, and rare, and all that, and I wonder is this some kind of sign for me. But really what I wonder is, where is God right now. I can read all about how God is there as people struggle, and I believe that and maybe should view this as a struggle. But part of me is saying, "Hey wait God, I thought we had a deal--you provide the signs--is this a sign, or is this you telling me to make the choice alone?" God doesn't want us to be alone. God is so many places for me. But where is God here?

Thursday, February 14, 2008

Faith, Hope, Love, and what the heck does this mean?

Here I've been, waiting to start Tysabri, watching that there are no new cases of PML, watching, waiting, hoping, seeming to get indications from God that this is the way to go. I have a new bracelet that says faith, hope, love. I now wear that all the time. The evening I got it--I came home and got on the MS website homepage. And there it was--after all these positive signs--2 people on Tysabri now diagnosed with an agressive form of melanoma. What the heck am I supposed to do now? Were all these "signs" really nothing? What the heck am I supposed to do. Let's see...I can go on the drug and have something like that and die in a few months--lovely. I can go on it and have it slow down my MS, or even make things better. Or maybe in a few years I can "look forward" to possibly getting PSL. What kind of choices are those? I guess I'm feeling pretty angry now. What direction should I go? Does it even matter? I didn't want an attack like the last one, or the depression that followed. That was horrible. But now I'm left with some kind of "stellar" choice--with nowhere to look for guidance, which I thought I had. I thought it all made sense. Now everything seems turned upside down.

Friday, February 8, 2008

It keeps going and going and going...

One day I hope to have a Tysabri infusion! Today my doc called me and told me about forms I need to fill out. Then I had to call the annoying nurse in neurology who will send them to me. I asked her if Kaiser patients had been on Tysabri and how they had done and decided she was clueless and maybe I should give her some blog addresses to check out. Whatever, but I should get the forms and information to read. I felt like telling her that I've read all the information I need! But I guess things are getting closer. Tonight I went to a jewelry event for a neighbor. I found this bracelet which says Faith Hope Love. I love it. I'm just going to wear it all the time.

Tuesday, February 5, 2008

Things that make you go hmmm........

Saturday I had my MRI--yippee. 30 minutes of listening to click-click, clack, pause..., bmmmmmmmmmm.........repeat for 30 minutes. My cool doc called and left a message today--he is called Count--to say he hasn't forgotten about me, that he has communicated with the neurologist (note--I don't like neurologists!), and that it sounds like all that is needed is for me to join a registry. But whether I need to talk to this other neuro doc is kind of unclear. And of course I deleted the message, which contained a long explanation--oops! So I was digesting all of this before the start of a meeting when someone asked me, "So, are you ready for tonight?" Huh? Oh, that's right, it's Super Tuesday (and also Fat Tuesday but I don't feel like making pancakes!) and I'm 'a precinct leader and all that. So today has gone like this--hour commute due to snow to meet with my leadership mentor on being a better leader (legs do not bend in the snow!), go pick up final caucus packet, get message from doc, go to meeting, facilitate another meeting, pause, write this post. Wow--I think that's enough for 1 day!

Saturday, February 2, 2008

Things I Love

I read a couple blogs about this, so I thought I'd make a brief list of the things I love.

- Family
- Friends
- People who care
- Being with these people
- Having faith in God and Jesus
- Being stubborn--it keeps me going
- Doing anything outside--especially skiing and handcycling
- Singing hymns in church
- Hope