Thursday, September 8, 2016

What is Your Name? Who Do You Work For?

It was great fun last week, going with Shane every morning to get the infusions, and then sometimes (most of the time) okay (every time, except one. No, we went that time too.) Out to lunch afterwards.

Luckily we had the Monday holiday to keep things fun, but he ended up working most of it. And when he wasn't working he was cooking. So I felt very spoiled. But now it's over. And back to real life. Sort of.

I was really curious to see how the steroids would treat me, as I had never done them in all the 25 years I had the option to. Shane said he just noticed I talked more. By day three I pretty much became immune to the effects, not as chatty, and he kept asking if I was ok? I was actually more than ok. I didn't feel an overabundance of energy, though the laundry pile was slightly smaller at the end of the week.  I did notice I just didn't get as tired doing normal things. Stairs didn't slow me down hugely. I could shop, make dinner, and do some chores.

I felt normal. Like 25 years ago normal. It. Was. Awesome!

Fortunately, we made all our travel plans while I was on the juice and I felt I could have useful input and offer insightful consideration. Don't remember what they were, but I'm sure they were there. Realistically, I just and watched him make all the arrangements.

Then day 4. And 5 came. Day 6 my feet started to feel funny, like I'd been standing barefoot in the snow funny. My step was less springy. My legs heavier and cumbersome. I just wanted to nap. Which I did. But things kept returning to"normal". Having taken a brief trip to feeling good land, the return to lame land felt really hard. I wondered if it was always this bad or I had it gotten even worse? I think its the former

I'm hoping it was a glimpse of what is to come after I've recovered from everything, so maybe a year or two down the road. Not that I'm thinking of taking  to rollerskating, ever again, but shoe shopping with real feet sounds interesting. I like how one patient described his new found feeling in his legs as "Positional Awareness".  He didn't have to check to see if his feet were on the floor before he stood up. It was real time feed back. No latency. I'm aware no one can predict the results, and currently results are really just focused on not getting worse. But lots of people have wiggled their previously frozen toes or gone on hikes. Or realized at the end of the day they had had gone up and down staircases moving boxes and hadn't thought twice about railings or the number of steps. They had just been living. Without micromanaging their every movement and energy stores. Typically, patients keep a diary of their procedures, the good, the bald, the pukey.  But over time updates  become less frequent until someone chases them down and asks what's up? And the response is, "Oh, I've just been busy doing things again."

Day 7 the paranoia made an a appearance. Or so Shane says. But he doesn't know what I know. Some insurance lady calls and says she wants to verify my information. Umm. How about you verify YOUR information. She says fair enough and gives me her name and encourages me to call the main number to verify employment. As if it's  her real name. So I ask for her social. No, I didn't really. But I didn't give her anything. So it's all good. And the transplant is approved for up to a year. If she's telling the truth.

So all in all, it's been an interesting week. I didn't gain much weight. Which is fine. Shane did most of the driving, just case I got a case of the Mario Andretti's.The one day I did drive was fine. So hopefully all the real effects were good ones, in my head, and we have our trips all booked. And I have one  billion and twenty philosophical thoughts on this whole process and my kids are reading Aristotle, so how does living/not living/ society/insurance/love of God/love of  neighbor/civic duty/Christmas/half and half/happiness fit together? Dizzy yet? Don't worry, it's just the prednisone wearing off.

Like I said. I have tons of thoughts. But maybe we should wait til everything is a little calmer. And I get some sleep. Fiona has been having her own restless times. Many of which consisted of but were not limited to NOT sleeping for half of last night. She kept whimpering,

"Mama?! Hold You." or "Mama?! Hold Me!"

Which, respectively translates to "Mama, I need to lie on your head!" and "Mama, I need to put my chin in your eye socket".
 And both of which only afford a minute of non-whimpering.

 I think she might be going through some  neurological growth, which I am seriously in favor of, and will gladly support despite the nocturnal near suffocating events. Even amidst the rough spots, I can't help but feel extremely joyful, tired but joyful, when I am  nestled between Shane and Fiona every night. And I am resolved to absorb and enjoy it all I can. It is so easy to take things for granted until they are not there. Right now I want to soak up and savor every minute I can.

In the mean time, Shane will keep me on the sane and narrow path. If this post disappears, it could be because  he read it and strongly suggested it is too whacky and the nice thing to do is to let it go. I trust him, so I'd do it. He asked if I felt any apprehension about the whole process. I said no. The  kids will  be happy and probably enjoying better living standards,  under his parents care.   If  I flip out, lose it, have doubts, get scared, all I have to do is ask Shane what I should do, and I'll cooperate.  Shane thinks, given my under-reactions to procedures in the past, I might not even notice all the needles and poisons and will sail through it all without incident. Or maybe he's just trying to psych me up for it. Which is a good strategy too. (He's so smart. Full package, I tell you.)

He has it arranged with work to work remotely for the non crazy times while he does my shots and I lie around complaining there is nothing new on Netflix, and then be available full time for the crazy times. While I complain I've already watched everything new on Netflix, and I'd really prefer some tapas to the hospital meal, and then do skype calls with the kids to keep their lessons going. So pray for him, especially. I just have to lie there and follow orders. While he takes care of everything else. Which he is extremely good at. And for which I am extremely grateful. Fortunately, we've had lots of practice. I don't think I would do well being on the other end of labor. Shane, on the other hand, excels at it. I'd be like,

"Soooo, its getting kind of late and I'm pretty tired. do you think we could just pick this up in the morning. After some sleep? And a latte?"

But Shane will rub my back for hours. Ask if there is anything he can get me. And afterwards make me freshly grilled steak and eggs every morning for weeks, despite working and walking a fussy baby til the wee hours.

So I think we are pretty well prepared for our respective rolls. But first I have to go and get my dental clearance for transplant. At least, the lady 'said' she is a dentist.

1 comment:

Anna Ward said...

You and Shane got this mamacita! you are both an inspiration. You be as ornery and paranoid as you need to be, it's all part of the process. Strength to your swordarm woman, you're doing it! xoxo -anna