The New Normal

I don’t know what the new normal is. Every time I think I have it ‘under control’ I am wrong.
Lately, I am doing a bit better. I feel like am learning to manage my disease (s) and not let them manage me. Yet still, I end up in the ER or flat on my back needing to sleep through a couple of days, too weak to bathe or get a drink. This feels pretty unacceptable.

The last two weeks were really exciting. My dear friend, Takako, was here from Tokyo. I had not seen her in four years. I planned a five day trip to the beach for the whole family and some other activities. There were some down days planned in and I got my infusion on time. I even took the day after infusion off and rested the whole day at home. I stayed hydrated, (I thought) and slept ten to twelve hours a night. This is sort of a basic formula for someone like me.

But still, the whole thing ended in one mini crash and a big crash. Our last night at the beach I was itching all over and so nauseated that I could not sleep; I knew something was really wrong but tried like hell to just tough it out.

At 1:00 a.m. I knew I had to do something about it because I had a grinding migraine that was just getting worse. I called around the Island (as quietly as I could) to see if there was an Urgent Care center. Nope. The closest thing was the ER at the little town across the ferry. I had to wake my husband and have him take me. He was worried he would not be “up” to drive home the next day so he grudgingly got up and drove me over but slept in the car the entire time I was in there.
It didn’t occur to him that he had already had many more hours sleep than I would ever get. Oh well.
So, I waited and they were pretty nice. I got fluids and Reglan and fell asleep in there. Finally they woke me and told me to call someone to pick me up. I had managed to get dehydrated on the beach even though I had been drinking a lot. Apparently I cannot drink sodas at all. I have to go with straight water and sports drinks… lesson learned.

The next day, my girlfriend drove us back to Austin and my husband slept in the car.
On Monday, I infused. It was a long and tough day and they gave me more meds than usual. I thought I was fine, though.

By Thursday, I was peeing burnt orange and having flank pain. It felt like, WTF?
My sweet friend insisted I go in to ER..

I was fine, just flared and exhausted. I slept all day Friday and am spending the weekend housebound. My husband is doing housework, driving the kids about and trying to understand why I can’t go anywhere. It’s hard for him.
I don’t understand either.
I thought I did all the right things. I am scared now. If this is the new normal, what does that mean? Can I make it to Europe next summer?
Will I ever be myself again?
IS THIS ALL THERE IS?
I have been trying to take all this one day at a time but I am feeling a sense of perspective here that I do not like at all.
I feel like I am staring something in the face that I cannot bluff away. I can talk/write tough but if this is how I am going to be, can I accept it?
Do I have a choice?
Can I somehow rebuild?
Can I pace myself in a more intelligent manner? Can I THINK my way through a set of diseases that don’t behave according to logic?
I guess that is the crux of the matter. There is no logic here and I desperately want some. I am a creative thinker and a flexible one, up to a point. That point has now been crossed. I want a formula for how to live with this shit: If I do A, B and C, I should get a specific result; but I don’t.
I don’t like that.
I don’t like it at all.
I guess I’ll keep reading, keep fighting; keep trying to do better. That is all I know to do.