Well, it's Thanksgiving-eve here in the States. Thanksgiving was one of my favorite holidays growing up. We went to my grandparents every year, Thanksgiving was one thing that was cool after my parents' divorce. We got twice the turkey! What could be better than that.
My experience of Thanksgiving has changed over the last couple of years. Last year was the first year I wasn't going home for Thanksgiving. It was also my first Thanksgiving with gastroparesis, though I didn't know that for certain. I spent the day with a friend, ate, talked and laughed. Yes, the holiday is food centric, but I managed to find joy in the face of uncertainity. This year I will spend the day with that friewnd, eat, talk and laugh. Even though the uncertainity of awaiting diagnosis has been removed, parts of the road ahead are still obscured by the shadow of the unknown. That's OK though. I have so much to be grateful for.
I am grateful for recently renewed friendships. I make a habit of pushing people away, then being surprised when I find myself alone. I have been shown the value of having people in my corner and I value their friendship more than they will ever know.
I'm grateful to my work family. They support day-to-day so that I can still contribute. The friends there give me a safe place to fall apart when I need to. My supervisor couldn't be more understanding. I truly lucked out.
I am grateful to my awesome team of specialists, While sometimes it can feel like they're groping for answers right along with me, I know that by-and large, they really care and want to give me the highest quality of life possible.
I am grateful for my life. As hard as it is, as fraught with uncertanity as it is, I have a purpose. I don't quite believe that everything happens for a reason, but if anything has brought me closer to beliving that it is this last year and a half.
Yes, Thanksgiving is going to be different this year, but so am I. Just like last year, I will find joy amid the grief.
Happy Thanksgiving!
Wednesday, November 21, 2012
Friday, November 2, 2012
In Which The Other Shoe Drops and I Have "The Talk
OK, remember how I said I was taking solace in the fact that supportive measures for nutrition have never come up? Yeah, that was nice while it lasted.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
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