Up and not able to fall back asleep at mumblemumble o’clock in the morning… My mind races… my wrist is tender… my toes and fingers ache. I’m thinking taking one of the post-op percocet would be wonderful, just to help me doze off for a couple hours… but then I won’t be able to get up for work in time, or I will have medicine head for hours and hours. I don’t think it is worth the tradeoff.
It has been an eventful week. I guess it is kind of a good news bad news kind of week… ultimate result, no sleep for the wicked tonight.
Yesterday (if it is past midnight now, it qualifies as yesterday, TECHNICALLY) was a day of information. I had my every couple months Rheumy appointment. Had a EVER so PLEASANT woman shut the rheumy door in my face, literally, because she was FORCED to be just like the rest of us and wait in the hallway while those INCONSIDERATE medical professionals actually ate lunch during their LUNCH HOUR! How dare they. Don’t they realize that she is IMPORTANT??? geeze.
Dr poked and prodded. Turns out the stiff ache I thought I felt, I am still feeling. Three Enbrel shots after surgery and I have a dozen involved joints and we are hoping that it doesn’t turn out that going off meds and having a major surgery doesn’t piss my body off to the extent that I won’t be able to get back (on enbrel) to where I was pre-surgery… if I am where I am now in 8 weeks when I go back… I will probably have to start taking something else. Great. I just started to actually like this medicine and now maybe trying to fix one thing might be breaking something else. Fan-freaking-tastic.
Dr can’t tell how much of the puffy yuk in my wrist is still post-op and how much is pissed off RA. Probably a combination of both. I hope the ulna starts to behave better soon. I don’t like the tender, wiggly, unstable feeling I have at the moment. And I totally want to start to do more aggressive PT on it on my own because this gentle stretching isn’t working real well.
I know, I know, Patience…
And Rheumy said to make sure that when (not if… when… frowny face) skinny boy hurts worse and his joints start to poofy up to have him see her so she can start to treat him. He is marginal serum positive RA but not OVERLY symptomatic… so we circle.
Turns out being a persistent… read in your face bitchy… parent sometimes actually pays off. Yesterday Squirrel Girl had an IVP test… she stressed so badly over the test. She is convinced I’m an evil mommy because I made her go through with it… but it was a good thing, I think… maybe… I guess… sigh… maybe…
She got the results late yesterday afternoon… the pain and nausea aren’t in her head, they are in her abdomen. She really is hurting. She really is having issues. She has a nephroptic kidney (renal ptosis) and will be having surgery in the very near future. She sees the surgeon Friday to find out when they can do the surgery. She is not happy with me, but in the end it will be better.
Breaks my heart… she sat on the end of my bed last night and asked me if she is a good kid. She said “I’m a good kid, right? If I’m a good kid why is all of this happening to me?” And now, at 3:30 in the morning, she is laying across the end of my bed trying to fall back asleep. She is scared. She is hurting and her mind races too. She is curled into her Taco Bell hoody. I wonder if the person who gave it to her knew just how much moral support she would be taking from it when it was given to her less than a year ago.
I wish I knew why this is happening to her, but I can’t help it not happen. All I can do is try to help her tough out the pain until the surgery and try not to be as scared as she is. I WANT to call all of the stupid doctors who wouldn’t listen to me a scream “WHAT… What” in their face. I SO want to do that. Then I want to jump on the mystery diagnosis program and scream from the rooftops that no matter what, LISTEN to the patient… listen to the parent of the patient…
Urologist said this may be why she can’t seem to stay as hydrated as she should over the last umteen months at least.
Sometimes having an extra set of eyes (thank you Dr Wang for being in surgery on Thursday last week… and thank you Dr Kansas for seeing her and listening… ) is a good thing.
Today… today bear goes to see what is up with HIS kidneys. Looks like (based on the numbers on his blood work that we finally got yesterday) he has stage 3 Chronic Kidney Disease. He tends to blow it all off. I know he is scared. He says he doesn’t want to go on dialysis. I have been reading what they do for stage 3. I don’t think, in the near future, dialysis is likely. He is possibly going to have to suck it up and limit sodium intake, pay better attention to his diet, and take meds. I think if he is willing to do this, he will feel better and a lot of the things he has been seeing lately will clear up. Now if I can just convince him to suck it up and listen to the doctor.
And I have figured out what Aspergers definition is interesting and if you take the online tests, you might be interested to find out what you find out. Makes you go hmmm
And here I am. Curled into my afghan trying to not worry. Trying to remember that stress is bad for my body. Trying to be quiet so the world doesn’t wake up too soon.
I can do this. I am strong. Deep long breath. Send the breaths to my toes… to my knuckles… to my wrist… to calm my mind… deep breath…maybe re-setting the alarm and trying for corpse pose, or legs up the wall, for just a bit… maybe a nap?
A little bit of coffee? No… maybe better…. Lapsong Suchong tea… mmmm… Twinnings tea… yeah… turn on my candle warmer to make the world smell like fall the best I can here (sometimes homesick is even worse) and the smell of campfire that comes from the tea…
Sometimes it is all about how you look at it… sometimes you just have to give up and give into being strong and giving up control at the same time.