It’s been elevated for the last couple of tests, which I get every 2 weeks.
My GoFundMe campaign has been stalled for about a week.
How elevated, and under what circumstances? While if it’s 100 or higher after a 12 hour fast that technically indicates abnormality (100-125 = glucose intolerance, > 126 = diabetes), none of that applies if you’re still getting hyperalimentation or constant tube feedings, or otherwise aren’t fasting.
187 fasting. The only thing I’m now getting by PICC line is lactated ringers with added vitamins and minerals. I’m eating normally with no tube feeding and I’m maintaining my weight.
I take Octreotide which can affect blood sugar, and Gattex which can affect the pancreas.
So you’ve got reasons to run a bit high, other than diabetes. LR is 1.4% glucose, octreotide raises fasting sugars, and Gattex can do lots of stuff we still don’t understand. I wouldn’t worry; I expect any persistent long-term elevated blood sugars can be easily managed.
They’re talking about possibly cutting back the LR to “as needed” (whatever the hell that means) with the ultimate goal of eliminating it entirely.
The Gattex may also eventually be eliminated once it’s increased the remaining bowel surface sufficiently. If it does a good enough job it may eventually be possible to also eliminate the Octreotide.
On the other hand, I may be dealing with this shit the rest of my life.
That’s what life is, dealing with shit. Some folks have more, some have less. Some lose their opportunity to deal with shit tragically young, being overcome by it at an early age. Some have minimal shit to deal with throughout their lives, and end up believing that such lack of shit is how things are supposed to be, for them at least.
You’ve been dealt a crappy hand, and I sympathize. My daughter, who has been dealing with an even crappier hand since she was 2, would even empathize with you about the misery of chronic illness and how it limits and constrains and shuts so many doors.
But for each of us it’s the only hand we have to play, and from what you’ve posted here, you’re not doing a bad job playing yours, and deserve credit for that, along with deserving opportunities to vent. Hang in there.
I’ve developed a couple of hernias. My surgeon tells me that it’s to be expected because for some areas of my abdomen there’s nothing but skin between my internals and the outside world. She also says that fixing them would probably be more risky than leaving them alone. But she will be referring me to a hernia specialist just to be see what, if anything, can be done.
I need to avoid getting any more, which means no more weight training (which, to be honest, I hadn’t done for a few years anyway) and no lifting of anything over 10 pounds.
That last restriction is disappointing. I’ve mostly worked as a software developer but one of my favorite, and most lucrative, past positions was running a corporate IT department which required, along with coding, moving servers and desktop systems around as well as shoving desks around, etc. I’ll no longer be able to do things like that.
I’m also wondering if I’ll now have to use a 10 pound bowling ball. Not that I bowl a lot but I used to enjoy an occasional friendly game.
Ten pounds is some sort of magical-medical cutoff. A few years ago I had a coronary artery stent placed. On discharge I was told not to lift anything over ten pounds.
But yeah, sounds like sound advice for hernia prevention.
For what it’s worth, I just bought a couple of your T shirts. I know it won’t help much, but man…this situation sucks
Thanks. that’s three I’ve sold in the last week.
I now also have an Etsy shop. I should post a marketplace thread for that. I can sell more than just T-Shirts there and they’re easier to work with than Amazon. (Not asking you to buy anything personally. I’m just thinking that a link on the SDMB may improve my search score with Google.)
I’ve been approved for SNAP and medical from the state. That will be a huge help.
I drove my car today. That will really increase my freedom and take some burden off of my brother.
Awesomely good news. It’s remarkable the effect that even seemingly small milestones can have.
(At the risk of hijack, about ten years ago my daughter spent several months in hospital for what was then thought to be severe UC [it’s now suspected to be Crohn’s, but at the time only the colon was involved]. Whatever the cause, it had ravaged her colon to the extent that she was taking nutrients strictly IV while various therapies were attempted. Anyway, one morning she called me and said, “Dad! I ate a piece of toast!” At that point I was glad I was teleworking because it would have been unseemly for my coworkers to see me on the floor bawling my eyes out.)
Eating was a big milestone for me. Unfortunately the first couple of tries it was taken away from me again.
Now the PICC (IV line) is gone and I’m eating normally.
I am so glad to hear all this good news, davidm. I know being able to drive yourself places is a big step toward feeling freer and like a “real person”. You have been so brave and persistent through all this and it’s about time things really got better. Happy New Year!
Nice to hear some good news! I hope you continue to improve.
Merry Christmas.
Nice to see another positive update. 
Thank you everyone.
Way to go!
Yay!