Yep, that’s right. I have been in the hospital in Austin, no less, and with another problem than the usual one! I am so proud of me!
I have been having some mystery infections.
Last Sunday it got really bad. The world was a blur and it hurt to breathe and stand up. I knew something was really wrong.
Stan and I had taken two nights at a nice hotel here in Austin for our anniversary. It was so nice to be away from home and responsibilities for a bit.
So, on Sunday morning, when we had planned for a leisurely brunch, I told Stan to just drop my sorry butt off at St. David’s North Austin Medical Center.
My temp was, 102.8. That is the highest I have ever had as an adult. And, for many of us ”’zebras” with faulty immune systems, it is even more serious than for a “normal” person. Our bodies don’t know to stand up and attack like that unless something very, very bad is going down.
So, I have been in he hospital almost a week and taking bags and bags of IV high powered antibiotics.
Three weeks later:
Sorry, but I do get distracted! The upshot of me going “septic” and my long stay at St. David’s North was solved by removing my port a cath.
This was my life line for receiving meds and fluids easily without anyone having to go hunting for veins that are either not there or decide to roll when you get near them, or that start out looking all innocent and positive and then blow up.
As you can imagine, I really, really liked having the port a cath. But, sepsis is no way to live:) (You see what I did there…. right?)
The hospitalist seemed clueless as to why I was so infected: my white cell counts were in the stratosphere, but he asked what I thought. So, all things being equal, we figured it out together.
All of those dire warnings I had heard about port a caths and the possibility of bad infection; happened. It was great when it worked but most of the time it was a mess. I had two separate ports placed on my right side in one year and then a third doctor who went in and tried to build a ‘little shelf’ so my site would be easier to access.
The guy who took it out offered to put a brand new one on my left and the same time as we were removing this one.
I said, NO THANKS. I think I will just put up with the poking and prodding and the pic lines, etc. That infection could have killed me and that is not the way I wanna go out.
I will just have to be firm when I ask for the use of a doppler machine to find a vein. Those tend to work brilliantly.
Anywhoo: I ramble.
Next up on the Katie repairs time table: June 26 I had some new shots in my back and another attempt at blocking the nerve that causes the pancreatic pain.
It was sort of fun because my son drove me and my friend, (who also needed shots and has a similar host of ailments)to get knocked out at about the same time.
My friend is from Australia and was planning a trip back in the next two days after the procedure. So, when the nurse was taking her down to the car and Samuel with them, she kept asking him, “Do you want me to get you a wallaby on this trip?” Samuel politely refused her offers and later told me he thought a wallaby was something bad or poisonous. I told him that it was actually a cute, miniature Kangaroo and he said, “oh ok then, tell her I would like one!”
My friend was surprised when I mentioned it because she was too stoned at that point to remember much at all!!!
I try to be cool about asking dumb Aussie questions because I know those must get old. but, I am afraid I will have to make an exception here:) I mean, she started it, after all.
This Friday, July 7, I am having eye surgery. It is something I am looking forward to and desperately need.
Long story short: I was born with a severe case of Strabismus, or, lazy eye.
I have had the muscles in my rogue eye fine tuned three times: 1967, 1972 and in 1984, I am due a tune up. Also, I have small growth under my eyelid that is not at all attractive and needs to be cut off and biopsied (fun!).
I loved the ophthalmologist that I finally made time to see. She explained all sorts of things about my condition I had never known. She said fixing my straying eyeball is not’ just cosmetic’ it is actually effecting my sense of balance and ability to see out of my “good” eye. She even gave my daughter a lens to look through that explained what I see. Hannah said, “that makes me a little nauseated.”
Anyway, it is a good thing.
And then, the surgery that was recommended by the Pancreatic specialty team in Dallas over six months ago, might actually happen.
Update: July 23, 2017.
Well, it took my a while to get back here, didn’t it?
What can I say? The heat really, really knocks me flat. So does chronic pancreatitis, lupus and hypogammaglobulemia.
But good things are happening! I have been doing some amazing work with a new therapist cum spiritual adviser. She is such a perfect fit for me that I know she is G–d sent. Every time I see her I get so excited that I can barely contain how grateful I am.
The Jewish mother in me wants to feed her or shower her with gifts. I know I don’t need to do that but the instinct is hard to squelch.
And, the best news of all: I have an actual surgery date!!! August 15 or 16 (depending on which day the o. r. with the robotic arms is free) and (so, so happy!) my surgeon worked magic on the insurance company and they are going to pay for the operation. Yeah. I feel like several weights that looked like giant question marks have lifted off of my shoulders.
So, what do I do now? I start worrying about failing the surgery. I mean, it is a gastric bypass. Although about half of the reason is to bypass my effed up biliary system, the weight loss thing is important too I have to lose all I can. And you know what? I want to lose all I can. But I am so frightened of failure when it comes to weight loss that I worry I will be the first person ever to fail the gastric bypass.
This morning sometime, I had a dream about it. In the dream I was telling people that I was failing for xyz reasons… and this was BEFORE the actual surgery.
I remember that in the dream someone sat down with me and told me, “if you keep telling yourself you will fail, you will make it a reality. It is all in your head.”
This hit home for me and I started crying.
I will make it happen.
I am being given a new lease on life. I need to take it by the horns and go with it.
I need to do whatever it takes: even the daily struggle to let go of the food when it has its hold over me.
I begin the pre-diet on August 1 and I need to go back to Dallas for a induction lecture given by a nurse. I just want to look and feel good.
I am scared but this is going to happen and I need to push away my fears and get on board.
I will.
I will.
I will.