Featured Big Stuff

It's been a pretty crazy year and in a few days, the kicker might be coming.

I spent over 8 hours the other day doing the final part of a test and will know what's going on in a few days. (and will go into that more when they tell me, they said approximately three days) No matter what the results, the one known thing at this point is that I will never again be capable of living on my my own.

That is not an easy thing for me to come to terms with. It means my own choices are largely dependent on the needs, abilities, and willingness of others. There is a degree of resentment to that, where instead there should be gratefulness that there is help. Not that there isn't a lot of gratefulness, but WOW is it hard when you've been fierce about making things work for so long and suddenly you just can't!

I would really appreciate prayer about this. Lots and lots of prayer. It's a very scary thing. I'm just glad it's hitting harder now and wasn't as bad when my girls were younger, though preferably nothing like this would ever happen. To anyone. Ever.

 

Now that Monday is so close, I'm getting shaky despite my best efforts to stay calm. It's not going to be good if they tell me to wait another day for answers. Tomorrow is supposed to be it.

 

Thank you Gwen and Scarlet. For some reason, it sounds logical to pack a bag and just run right now.

 

Well blah. They said if we don't hear anything by FRIDAY, to call them on MONDAY. As in we get to sit here waiting another week because "it's a lot of information to compile." They said it's together and almost finalized.
Um, yeah, that doesn't sound ominous or anything.

 

So they called today and instead of talking to my husband as usual, they asked for me. I took the phone and went to the bedroom to be alone.

Sat on the bed, all prepared, where they told me they called to tell me...

"We don't have the results. Did you call earlier this week to ask?"

I swear...

Yeah, I did call last week. Where they said they would call by Friday and if not, call on Monday. Today is Thursday. When I said that, they said "oh, sometimes they do take a few weeks to get everything together."

Then they asked me exactly which test it was. ROFL They weren't even sure why they were calling.

:BangHead:

 

Now they have them, but won't tell me because their policy is to have the doctor tell you, and the doctor says they don't have them. So we called back, and they said they sent it to the doctor, so they said "we're trying to locate them and will call you back." They didn't, so we called, they aren't returning the calls yet.
So we called the original place and they said all they can do is offer us an appointment with them sometime in the future. Where we'd pay. Again. To sit down and talk. And we'll have to pay anyhow for whenever the referring doctor gets the stuff together since that's the one doing the actual care.

I beyond angry now with all of them. It is very wrong to do this to a person. Of course it doesn't matter to SAY to them that it's a violation of rights to not tell you, because by the time it moves through the complaint department and is proved that with-holding my own medical information from me is a violation, the doctor will likely have found it or had another copy sent in. It's so frustrating.

 

Still "lost in the system."
Not even bothering anymore. The last we tried, the neurologist still can't find them and the place that did them said the only way for us lowly patients to get them (my wording, lol) is to come fill out paperwork and then they petition the doctor to see if he'll approve or not to release the information to the patient.

In the meantime, I have an appointment coming up with the allergist. Sounds simple, except I have to stay off Benadryl for five days prior, which complicates things a lot. I was exposed multiple times to latex recently and my allergy gets worse each time, so now it's extreme and I've been very secluded. Without the Benadryl option, I'm going to be very limited even in my home with DH needing to be ready to run me to the ER (though it keeps being the professionals exposing me, grrr!) and me needing to be very aware/cautious/ready to clue someone in at all times in case it's a reaction starting, since it can move so stinking fast.

 

Okay, finally some stuff being settled!

What they were looking into was a high possibility of Alzheimer's with a pairing of Parkinson's. Lovely!
What they found is NOT that, which is very good since my job used to BE taking care of Alzheimer's and dementia patients so I knew exactly what that meant and what my plans were if that diagnosis would have been solidified.

But they did some specific bloodwork, which found very high levels of tryptase (and more) and that explains the cognitive decline AND on top of that is causing me to head into anaphylactic shock at times when I wasn't even exposed to latex (which I'm allergic to so it made no sense for it to be happening for no apparent reason!) And other stuff. It's apparently caused by some...long word but also explains the kidney and stomach crud during flares so maybe if they get it under control I'll quit bleeding. Yay!

I'll know more about it later, just found out yesterday. The follow up for this was originally set up next month, but that was before this came in so we'll see what happens. I haven't exactly been at my best lately and probably should have gone in when, well, the doctor wanted me to go back a couple weeks ago or whenever that was. I just didn't want to. Pillows are so much more comforting than needles!