Wednesday, March 6, 2013

Coping with Chronic Flopbott Syndrome

Finally I can text my good friend who has texted and called: Can you talk now?

It has been over two weeks that I have been waiting to have the strength to talk.

"You need to write about this." she says to me on the phone.

Me: This? (and I stop and wonder what  this  is? And what good will it do, you, Reader ?)

So early in the morning when I am up for a moment, having been to the lew I disect what this is- and I have to go back to what her first q's to me were:

"OK. What are you doing right now??"

This threw me. I had called to hear all the lovely things that go on in normal people's lives. I did not expect her to jump right to the heart of the matter.

hmmmm.... I have to think. Look at my surroundings. I have my laptop on my lap. I am looking at past pics of family. Going through things for inspiration for something to write. I happen to be at this picture when I called her- and it makes me laugh.

(pouty nehpew. ha. His mother is pregnant and he calls the soon to be baby boy: Baby John Wayne. So we have pulled out all the John Wayne movies lately and watched them. This is one thing you should do for yourself in a lifetime. John Wayne. Classic.)

So I confess to her:

"Well, I am looking at pictures that I have taken in the past on my computer. I have gotten out of bed today only to do the basics. Eat. Bathroom. I showered yesterday. I moved to J's room briefly while my mother changed my sheets for me. I came back in and helped finish the top and we talked for a moment....

 ummmm. J. went with cousins today for a wild time and then they came back and have been playing on the Wii Pirates of the Caribean and an Aircraft game "

You see I had pneumonia,and probably had it before I did the infusion of the new drug that bottoms out your immune system on a good day. But a CT scan was what showed the P. and all the X-Rays showed clear as a bell lungs.

(b-day roses. Lucky me. I keep getting fresh flowers. And I haven't been able to take down twig tree and snowflakes cause we keep getting snow! )

But I felt a weight in them... but you go ahead, right? Until later you mount a fever of 103 for a few days and after spending the nights in Padre's chair, J. on the couch camping out next to me. Like Sounder I just sort of went into the back room in a daze and crawled under the sea foam quilt of the guest bedroom. Actually, Sounder, the dog from the book doesn't have a bed to crawl to but he goes off somewhere else for the the imminent death. I can think of other animals/dogs in my reading that do that; leave their masters headquarters for some reason to die.

Not that I thought I was gonna diie. But I sure as heck wasn't going to the ER on a holiday weekend.
Faintly, in the back of my fuzziness of fever I could hear my mother talking to a Dr. down at the U.
Something about a daughter. The Dr.s daughter. If it was him, he'd take her.

No. Please. Just let me stay under the sea foam and not have to go and have needles stuck in me, get whatever the rest of the waiting room folks have on top of what I have, and have a Dr. tell me my labs look great and give me a clean bill of health.

Which is almost what happened... except this time my Dad, Padre,

(He's a good trouble shooter on a case of trouble and I'm glad he came on this one...)

 caught my oxygen levels. As did the competent nurse and pointed them out to Captain ER. The x-Ray became obsolete, CT scan was done. Sneaky Pnuemonia shows up and Specialist is brought in.

All of this happens as I am sinking. Oxygen is important and without it. I just sort of didn't recall anything. I did think I was hallucinating when a woman walked by that resembled a child hood friend and I said her name... thinking that I was dreaming or crossing over. She backed up. It wasn't her. But it was her older sister. Somehow in the mix she grabbed my arm to look for good veins. NOT one. And she said something about how hard it was to get her boys here. Twins. Close in age to my boy. And my mind goes to that boy- of mine. And I think of all the things we do together and I keep breathing.

They give me oxygen. And suddenly the lights seem to come back on instead of closing like the shutter of a camera. I am wheeled out past Captain ER and we make eye contact and I am slightly mad at him for a moment because I had been in weeks before with him. Before the infusion. With this same problem. But he didnt' find it.

Is he regretful? Does he care that he didn't catch what was wrong? Then I am too tired to hold a grudge. It is the ER. Unless there is blood it is really hard to catch a chronic, flopbotting ordeal.

Which in the world of Chronic- could mean Anything.

(button garland moved down to mix with the berries and a strung up rose- the laffy taffy one. We'll see how it dries- if it retains its triple center....)

Fissures. A blockage in your intestines that makes it so you can't go to the bathroom.

Too much going to the bathroom.

An infection. Upper Resp. The Flu. Again. ANYTHING.

And usually you try to work these things out in the Dr. office BEFORE 5. BEFORE the weekend.
So as NOT have to end up dragging your dehydrated self into the ER.

So you push fluids.

I hate that phrase out of the mouths of nurses. Even my favorite nurses. If I were a nurse I would even hate myself for saying it: "Push Fluids!" Like it were watering a flower and you could just pour fluids on top of the plant and they grow.


Pushing fluids when you are sick is like trying to climb Everest without having trained or even bought the plane ticket over there. You are sick. Rolling over in bed is a Herculean effort. And sipping on the mug you got from your last hospital visit or one of the many, is just a dang hard thing to do. But it beats getting stuck 4 or 5 times before they get a vein and possibly picking up staph.

So you push yourself. Hug the mug under an arm and sip. Finally it is futile and you end up going to the infusion people who can get a vein and give you the needed fluids. Cause you lose them fast.

Am I on track, C? Talking about "this"?

Our conversation leads to the Oscars. The pretty dresses. And I think of how irrelevant that all is but then again it isn't. I love that there are mediums of trying to turn life into poetry.
And then give a gold prize to the person who can most poetically do it, hope he/she is dressed worthry of our judgement and go from there. It's a distraction to the real life that is unpoetic as we live it. Because there is nothing poetic about my day it seems. Unless I put relevance to it, and possibly turn to the One that can consecrate it. And on paper, it seems more poetic. Like in a journal.

I tire. And our conversation has to end. This makes me the most sad. Oh! How I love to pretend that my life is still LIFE! That in normal times I could jump in my car and race down to see friends down south- or ANYWHERE! That we would do the normal things friends do that have kids. And that's swim with them in the pool, go on little hikes, ride bikes.  Sled.

Car pool to different sports.

(more white buttons.... in a Mason jar. I love jars as you can see. And old buttons. They connect me to my aunts. Whose buttons they belong to. As well as my own have been added. )

oh. That reminds me, she mentioned snow boarding. This hits hard. Why? Because snow boarding started to become "in" right when I was going "out" of health. One last ski trip in college and a jaunt with a cousin to Targhee almost whispered to me: "you will never do this again."
My bones. Or joints. Or muscular skeletal frame was DONE. They would never ski again.

As was dating. Done. My bed time was when they wanted to pick me up. Nope. Drive in my little red car to the investment center where I worked under the stressful mandates of a stock broker, drive back home, eat at 5, go to bed, start all over the next day at 5 a.m.

So back to today...... why the struggle?

 we used the least amount of anti-biotic to help me fight it off that we could to avoid C-Diff. And blood tests say I have a virus or two right now. Three days ago I walked 13 minutes. The next: I did errands. So who knows. Then:. A block and  half with a friend- amazing how much further you can go with a friend.

Today: nothing. Flat. Flop bottommed out. On my Arse. The night before I googled viral syndrome. Chronic Fatigue Syndrome and ME which is what he CFS people feel is more of a description.

"Is this what you were meaning, C.? When you said I should talk about this? "

What kind of life is this?

Later I call my other friend. *It is good to have friends!

This One that has walked a path I can not imagine. She has suffered. But has NEVER let on to it.
 I tell her what has happened to me. She gives me bits of  her wisdom. I'm sad that I can't go over and talk to her. She isn't far; Two blocks. Her advice on pacing my physcial self is good; use the wall to do weight bearing exercises; the dresser to steady myself as I do knee lifts and go up on my toes. 

Why this work out? I am coming down off of prednisone. "Rescue prednisone" given  in the hospital to help my body from going into shock.  In the hospital it is called: Prenisonlone. Before I knew about it, I had a hospital stay after a trip skiing with my cousin. I could barely walk. THEN eventaully I went into the hospital, got this apparently, and felt on top of the world! So guess what I did! I climbed Table Rock with Alyssa and Amy.

Two weeks later, I talked about it with a kid who came home from his mission and he wanted to go- I said: "Let's do!" And I did. Except this time... was a lot slower. Because I was tapering from prednisone that I failed to even look at or question the side effects- because who does that? I just felt I had been healed and rebounded from whatever it was that happened. Chalked it up to the fever!

Back to this week, now that I KNOW this horrible, toxic drug.- I have done three day courses of a certain amount and THEN will get back to my regular dose that I was at BEFORE the pneumonia.

I am tired.

I think of the people on the forums that I have delved into to find out what is wrong with me- but really it is just to find that I am not the only one out there that is dealing with chronic 'drag your body down into the depths of THIS-NESS.' (This-ness is a term medical personale don't know about. And it is an infirmity that can mold to your very own problems. It's a blanket term we patients can now use cause I have added it to my personal dictionary!)

This is the reality. It doesn't make me afraid. But I do wonder how my son deals with it. He says he likes me just the way I am. But I am not stupid. He wishes I was out there right now in the snow sledding with him or hitting the slopes like we thought we would this year.

He has seen me healthy. We have ridden 11 mile bike rides. But he has grown and even if I was in good health, my arm wasn't as fast with a baseball as his friends and coaches can throw to him. But I can still do grounders and pop flies!

I am tired. And there is so much more to....this....

That is all I could describe to my friend, C. and it makes me feel better and glad she knows and cares about all of THIS! : )

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