Day 29 11/13/08
November 14th, 2008
Had the day off. Way too much time on my hands. I went shopping for gifts today with Jack, wanted to pay him but he refused. Spent too much time on my feet, and didn’t get everything I wanted. Carolyn told me I looked in the wrong place. I’ll have to go back Saturday between PT and acupuncture.
Last spinal tomorrow, and frankly, it’s anticlimactic. I seem to have lost the big gains I’d made. I realize that fatigue or Valium might be the culprit, but I don’t know.
Also, the spinals don’t seem to have the immediate effect that the IVs do, so perhaps I should be looking down the road apiece. It’s discouraging when you can’t do what you could 5 days ago. But I’m coming back, and fortunately, the regression only involves balance and walking. More energy, no dizziness, and better speech are good: I’m just a little greedy, I want it all.
14 of us descended on the Holiday Inn buffet tonight, and we had a blast. There is a camaraderie among people facing these challenges and those helping them that may be like soldiers on the front. I’m not sure, having never been in the military. It is like being on a team, banded together in a common cause. I’ve made friendships a lot quicker than I have in the past. My father often told me, “we’re all in this together”, if I never quite got that, I do now.
Anyway, we ate too much, drank too much (those of us who could) and generally enjoyed getting out of Camp Stemcell. Got to see my friend Michael, the maitre d’, one more time. It was a going away dinner for me, Jim and Carolyn, and Debbie and Emma. We all leave in the next 4 days. Between tomorrow’s spinal, and Saturday’s packing, I won’t be going out again, but I won’t forget this place, or these people.
Well, since this is starting to sound like an ad for Bermuda Tourism, guess I’ll call it a night.
Entry Filed under: ataxia,Uncategorized
3 Comments Add your own
1. Deb | November 14th, 2008 at 4:02 am
Yikes…my anti spam word is “lugubrious”…I have no idea what that is !
As your time at Camp Stemcell draws to a close, I sincerely hope you see gains and progress to make the journey worthwhile. The opportunity to spend large amounts of time with people in the same or similar circumstances certainly seems like one positive outcome. Being able to spend time with people who can be truly empathetic will at least serve to give you a perspective that wouldn’t be attainable without the experience. Now…we just gotta pray for continued and increased physical improvements !
So…we will not fill our minds with “lugubrious” thoughts…we will instead fill our minds with joyful, happy, positive thoughts of work well done and time well spent and new relationships forged with people who will join those that already care for and love you to be part of your very wonderful future and hope that you no longer have to be exposed to these God-awful run-on-sentences !!
That’s all ! Bye…talk to you soon !
PS: lugubrious: mournful, dismal, or gloomy, esp. in an affected, exaggerated, or unrelieved manner: lugubrious songs of lost love.
2. Chuckie | November 14th, 2008 at 7:57 am
Here’s hope that all goes well with your last treatment and the gains you experienced return. Can’t wait to see the same old you!!!
Have a safe trip home and I’ll see ya soon
Chasrlie
3. sylvia | November 14th, 2008 at 2:40 pm
Just a note to let you know that I am keeping an eye out. After a couple months goes by, maybe the reason you wanted the spinals will become obvious. They sure do seem to take a toll on your abilities. Clearly,you must believe they are more effective for your disease type, otherwise it would seem preferable to go with the IV therapy. I agree with Melissa…thankful you have strong bones!
It’s wonderful to know that you have formed lasting relationships with so many people there. You have quite an international network going on. I have a feeling that you won’t be waiting for some doctor to clue you in on the cutting edge treatment modalities. I wonder if you have ever run into an MD, or DO who has been to the clinic there?
Maybe you will continue an online blog after you get home? It would be nice to keep a journal somewhere. It would be useful for you, and no doubt others who are working through a similar condition.
I wish I was going to see you arriving home, with all the family and friends ready to jump you at the airport! Sending you lots of hugs and kisses!
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