Friday, December 16, 2016

Journalling; Heavy heart

Oh boy. I really pushed it. Plus, I cut myself twice on the fingers, once with paper desperately trying to clear recycling, and then (get this) with a butter knife trying to cut the peel off an apple for my smoothie.. a butter knife.. Only EDS skin gets cut by a freaking butter knife..and it's all inflamed/not healing all that well. It's the least of my problems though.
I'm now done for in bed, and I kind of resent that I've used all my fragile spoon supply on the following, because I have some important work to try and do in other places, including trying to get the vocals on this final song, so I can complete a 6 song EP and get it up on tunecore/Itunes as an special edition EP, to also give as gift to donors. I have to have enough spoons with my compressed brain to be upright singing to do it. I got some vocals that were fairly decent-ish, but not done.My spoons have been so precious and few lately, and if we don't find out what's specifically making me ill (and feels like it's killing me, full stop) it's bound to get worse. There's more than one thing. One of these things may be a simple but currently debilitating issue (gallbladder is done for) and the others are more tricky (brainstem compression and biochemical complications like endocrine and immune disease, and/or mitochondrial disease) I long to use my spoons to do the things I love.
If I had my way I'd have a cleaner every day, and I think in my position it doesn't sound princessy to say that. I'm to some degree terminal. I want more time. I want to play like I never have throughout my life. So much trauma and crap for being me. I don't want to fight anymore, just to play. Just to steal joy.
We did have cleaning come in once a week, which was so helpful, but the agencies switched and for a month they effed up badly, on communications/intake and no one came in, so things got challenging and deep cleaning behind - which made it really hard for my immune system to recover just getting out of the hospital after that vicious flare. Horrible timing for them to do that. So I've been forcing myself to try and do some of it, and end up easily incapacitated and ill, because these days I am pretty freaking crippled.
Another slap in the face is that I just got a call from the red cross saying they won't send me the part time wheelchair because when the OT came over she thought I didn't need it, she thinks "you can walk." I had asked the physio to send me a wheelchair so I could go out and see the lights if I was feeling too unwell. Nope. Once again too much to ask. That was really nasty of the ignorant who clearly understands nothing about collagen weakness and dysautonomia. I cannot buy one right now. I need to hang on to whatever I can to try and get to the USA. I like walking as much as I can, I do, but some days I can't (more than a block) and I want to go out, and feel the air on my face (bundled up of course.)
My being upright exerting is like a small hourglass with sand that takes a couple hours at the very most to run through. If I go past that I will suffer, and suffer greatly. Today I pushed it all morning when already feeling pretty unwell from going out yesterday, plus my gallbladders' been flaring bad, so I'm now in bed and sick as a dog, and shaking. With the thing we think is gallbladder, I'm on thin ice with that, which is such a bad combo with my compressed brainstem and overall issues. Bad add on, insult on injury big time. They haven't been taking seriously enough how much more fragile I am if I run into a complication like this.
The gastro in the hospital was careless and neglectful with me, and the second opinion referral got rejected - but things have persisted, and now my GP is behind me, because it's the same thing, still going on. My liver enzymes test ok, but the dysfunction and pain is pretty bad (in the liver area, but especially in the gallbladder part as it seems, let's hope) Pain somewhat constant, sharp, dull and pressure, it's classically GB in upper right abdo through the shoulder, feels enlarged, feels hot sometimes (infection concern) appetite is low (I'm put off meats which is so unlike me), nausea is somewhat constant too, my ability to digest fats relies on a slew of digestive enzymes, bitters, lemon water, dicotel pills, and other stuff too TMI, very concerning. All the crutches worked at first but no matter what I do, it's gradually getting worse/persisting.
My GP was hoping this might recover itself if I persist with the careful specific diet and all that stuff, but I'm not sure if it's getting worse or if it's a detox reaction ie. my GB/hepatic system is trying to eject stones and sediment, or whether it can, or whether it's just dead. So she found a way to order me a scope (all gastric, hepatic) without going through a gastroenterologist first. This might take awhile, and she also told me to go back to the ER should i get some kind of severe attack, and emphasize where/how the pain is, and fingers crossed they would actually deal with it. She's done the best she can do.
I have to pray to my guardian angels about things right now. This is the toughest Christmas yet for me. My heart is so heavy I don't have words. I'm often weepy. I have so much remorse for things I wish I had done and not done. I want another chance at my life. I'm desperate for answers and finances stand in my way. If they were not in my way, I'd be getting a private abdo MRI and gastro consult right now, and book to go meet Dr Rosner (neurosurgeon) in NC asap. Among other things. If only a miracle would happen. So, Christmas - I am not feeling it - I just care about my boys being happy, and having my life, but really what I want is my life back. It seems like an unrealistic wish. I hope it'll just be over soon and I can mentally regroup, and find my sense hope - somewhere in there again.

-R.G.

Update; three weeks later it was discovered I'm suffering with Pancreatic Exocrine Insufficiency and need to be on prescription pancreatic enzymes for life. After being emotionally assaulted on christmas eve at the hospital, and more I don't want to elaborate on, I was the one who asked for the enzymes. I figured it out after being abused and left in a deadly dangerous situation unable to absorb fats which, with my EDS, could have caused a heart attack. I started gaining weight and being able to breathe, within a few days. I'm now on them for life.

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