I forget lots and lots of things. This is very frightening but we think it is the medication (heavy duty pain meds.) that cause it.
My short term memory just sucks.
But the real reason I titled this post, “I Forget” is because of another type of forgetting:
Every time I have a good day or two relative to my health, and by this I mean I can manage pain, itching, dry eyes, mouth sores and the rest and do fine, I forget I am not getting better or “over” all my problems.
So, I tend to want to run around and go crazy town on things I have no business doing, or that I should at least pause about.
A good example of this was about two weeks ago, maybe three: it was before flu, pneumonia pancreas flare and three day hospital from hell, but not long before.
I tell Stan all of my plans, everything I am doing or going to be doing and he just looks at me and shakes his head…. and says, “well, it depends on how you feel that day.”
I get very insulted. I mean, how could he NOT know this relative calm is my new state of being….no lupus, no immune system disease, no chronic pancreatitis, no interstitial cystitis…. no doctors and no tests and NO ER or hospital stays…ever, ever again.
I actually believe on some level that on a good day I can forget all of this and it will go away.
Maybe this optimism/blindness is a coping mechanism. Actually, I am pretty certain it is.
I am so desperate to just live my life that when I have it back I just want to go full tilt until I fall down: But, the thing is, I don’t want to fall down.
I suppose it shows my age that I remember and still love an old Saturday Night Live shtick where someone would make a claymation doll called ” Mr. Bill.”
He was in a lot of episodes and would always end up getting smashed into a ball of colored play dough after he attempted to go do a task. Trust me, it was funny. You would see Mr. Bill doodling along and then suddenly a big hand reaches down and starts to smash Mr. Bill into a blob. His little, play dough, red lips move into a shape of an “O” and he would say, ” No! Not again!” and then all the viewer could see was Mr. Bill being smashed into a little blob of nothingness by “the hand.”
The announcer would say, “Oh, poor Mr. Bill.” And Mr. Bill would sort of whine and say,
“On NOOOOO…..NOT AGAIN!
And that was that. They moved on to something else silly for the week.
I have been identifying with Mr. Bill lately,
Every time I think I am up and running, I get so excited, and then the giant hands that seem to hold my hold my fragile health comes down and smoosh es me all over the place: It’s like I am the plaything of some gargantuan toddler who builds me into a little, functioning, middle aged woman and then decides I’m boring that way and sticks me head first into the play dough fun factory and squeezes me through. My colors get all run together and I come out looking like a blob of crap.
This particular round has been pretty disheartening as I have had round after round of hospitals and doctors and nurses and they have been (the doctors) :in competent, mean, and simply wrong. I have not gotten the care needed to get well so here I sit in hospital #3 in the space of five weeks.
My pneumonia is finally gone it seems.
However, I still have c-diff.
And, the fact that I take prescription opioid pain medicine is being used against me as a weapon:
I have been spoken down to, yelled at, thrown out of and humiliated by doctor after doctor who does not know me or my history and who is disinclined to speak to my pain management team or even call in their own. Instead, I am simply treated like a junkie and a criminal.
This is all because I have chronic pain, which is worsened by what I have been going through.
I have lost 70 pounds since August, but I still have chronic pancreatitis.
I still have a broken back.
I still have lupus and swelling in my tissues.
And I still have a pancreas that can only be visualized by Dr. Burdick and he isn’t here and quite frankly, I don’t know where he is. He is off the grid.
I am mad. I am sad and I feel like I have been shamed for being sick.
So, once again, I will talk to a charge nurse and try to defend myself and once again I will try to hang in until I am better.
The doctor is afraid of a lawsuit and must prepare me to transition to home with my normal meds. He cannot keep me on my IV meds for more than a few days or I guess his superiors breathe fire down his neck.
So this has absolutely nothing to do with me or my needs or my case.
I just took my normal pill with liquid antacid and the pain from the GERD is killing me. I won’t be doing any more sleeping.
I can have the IV version as a stop gap in three to four hours if I need it. That’s ok. I understand the whole deal.
My problem is this: I am not getting better and this is the second antibiotic. How long will this go on?
How can I prepare to go home if I still am sick and not getting any better?
When does the surgery become an option?
This is what I want to know.
My immune system is down for the count and not participating here. I think I need some other alternative.
I don’t want to sit here much longer in isolation.
But it looks like I don’t get to make that choice.
I sit here whether I like it or not.
It is the weekend and the staff will be sparse.
Should I ask for another doctor?
Probably not.
I should ask for a pain consult but I won’t get one.
“OOOO NOOOOO” Mr. Bill is getting Smooshed again.
Poor Mr. Bill. He keeps forgetting he will end up looking like crap by the end of his small moment in the sun.