SOOOOOOOO.... 'Victoria! How's that feeding tube working out?'
Self: 'Well Self....I would be happy to talk about it if it happened yet'
So what's happening here. Well we agreed on a feeding tube but getting it set up has proven difficult because you can't just go into a med supply shop and get everything you need and the internet has not furnished a lot of info. The biggest part is because I technically can swallow, the procedure goes down as 'voluntary' even though I've experienced steady weight loss for a bit now. I'm down to around 140 lbs.. I'm showing signs of being malnourished (low prealbumen and all that, around 16 last time we checked).
So what am I doing while I wait on supplies to come in? Forcing myself to eat which has been like trying to force something your dog tried to eat but your trying to wrangle it from their mouths. On my own, at the most, I can ingest around 1000 cals, but many days it's less than that.
Why?
Because...pain. fiery, burning pain in my gut lighting up like a really screwed up Christmas Tree. This is of course followed by either, extreme nausea, vomiting OR, my personal favorite, diarrhea OR really painful constipation.
So this morning, I'm catching up on my YouTube Christina Doherty videos. She is an EDS Vlogger that I follow and I ADORE all of her videos. They're really informative and have carried me from diagnosis to now.
So I cut my hair this week also. I look like a cross between Julia Roberts as Tinkerbell in 'Hook', and 'Alice' from Twilight. So I LOVE IT!
How goes the joint pain?
Not so much fun. Right hip feels out of place and hurts like a beast, Costochondritis is still flared up and raging, and my knees started to have some pain.
The worst thing is that I'm soooo freaken' tired sitting here! I'm sipping water because I really need hydration right now but what I really want is my Queen Memory Foam mattress, and SLEEEEEEEEEEEPPPPPPPPPPPP. I'm so tired, I envy Sleeping Beauty and Snow White. I'm so tired right now that I envy everyone who is currently sleeping instead of being up, working and writing right now. It's not even 9 a.m. and I already want to sleep. I want the land of Nod more than anything else on this planet right now. I'd say a favorite food but we all know how that would end.
This week I did get out of the house and even cooked a bit. I got out and went to, of all things, an arcade which wound up being a lot of fun and apparently I can still shoot zombies with the best of them, though apparently playing Tetris is still not a strong point of mine.
I also made homemade guac and deviled eggs! Now I could only have a small amount but seeing my hubby that happy was so worth the effort! He loves food. He gets this sly, half-smile of pure contentment around good food. Which, of course, made me feel like Wonder Woman! You laugh now, but with my energy reserves being this low, it's amazing I could stand in the kitchen for a couple of hours and get this done and not turn it into monster sludge instead of edible food. In the past, I'm pretty sure I messed up literally everything including instant oatmeal and mac and cheese. Now I ask you....who messes up instant oatmeal. Add water and milk. That's it! Not for me. I overflow it with milk or water and then forgo the entire thing, retiring to my room defeated to plot my next attempt.
At least the sun is out. It's very deceiving though. Kind of like false advertising. It's sunny but FREAKEN ICE AGE outside! I'm pretty sure I saw that squirrel from 'Ice Age' running around chasing the same nut that always eludes him until he inevitably sets off the next catastrophe. Someone wrap me in a parka and send me south. I'm done.
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