When I last left you, I had just completed eight minutes on my stationery bike. That is three more minutes than I had attempted in the days before. I needed about ten minutes before I felt strong enough to hop (well, you know what I mean) into a HOT shower, then dry my hair. Perhaps only you other MSers can appreciate being able to do anything else after all of that heat!
Then I had lunch and headed out to volunteer for 2.5 hours at the team packet pick up for The Race for Hope. I love a girl who is bravely battling a nasty brain tumor. Since I can't WALK the walk, I help in other ways. I sat at the frantic check in table and guided tons of people through the process. Exhilarating and exhausting!
I brought home two boxes filled with shirts and race numbers for our team. Then my daughter and a friend helped me sort and arrange everything for our teammates to pick up before race day on Sunday. Then I made the girls paninis for dinner.
Finally, I picked up my other daughter and a friend at school at 9:45 after a play, and took the friend home.
What a day! And I did it all! It felt great. Until Friday morning that is.
New rule: Just because I can do it all, does not mean that I should do it all. At least not in one day!
I was wasted on Friday, although I somehow managed to get my girls to the lab for routine blood work at 8:00am. The wonderful husband had to take them to school after that because I was done!
I spent the rest of the day on my a$$, and if I had bon bons, I promise you that I would have been eating them! But I got it together enough to go to our wonderful friends' house for dinner. Although my legs were still weak, the brain sharpness was all there.
Saturday morning I drove downtown to a brunch sponsored by the MS Society. It was a schlep to get to Gallery Place Clyde's next to the Verizon center. I felt compelled to go because it was the Young Adults meeting for 20-40 year olds. This was my last hurrah! If I tried to sneak in next year, they might card me at the door, and I'd be booted out on my well rested a$$!
I sat at a table with some very interesting people. What was fascinating was all of the different treatments that we represented. One woman was in the original Campath trial and doing great, another is on Rituxan. The other two are on Avonex and Tysabri. But the most amazing coincidence is that I randomly sat next to the only other person in the room who had been Liberated! What are the chances? She is a patient of Dr. Dake, but told me that, unfortunately, she has not seen much, if any, improvement. It was sobering to hear.
I imagine there are more people out there like her. We just don't hear from them. If you were lucky enough to have this procedure, and then NOT get any benefits, would you be blogging and posting on forums? Didn't think so.
I am so grateful for the improvements that I have achieved. But I still get a little jealous sometimes of those super responders who have crazy improvements only hours or days after Liberation. I can only imagine how disappointing it must be to go through it (with 4 stents) and get nothing.
I wish I had asked her if she has at least stopped progressing. That really is a huge achievement that I think gets lost in all of the excitement of improving symptoms.
Anyway, my days have been crazy full since last Thursday, so I have not been back on my bike since then. I'm signing off to go do it right now!
No comments:
Post a Comment