Saturday, June 26, 2010

"At least I'm still good at lowering my standards."

A quote from a conversation I had this week.  It was said with a laugh, but damn, does it ring true.

I was recently told this:  "So it was kinda sad.  I was thinking I need [small knitted thing A] and you could knit it for me!  But then I remembered, oh you can't."

And while I laughed along (since black humor is my new skin), it hurt.  I can fake it but I'm bothered by the things I can't do.  While I'm sitting here in our room with my back all whacked out so that I can't walk around well, I see my jewelry making stuff in one corner and my metric ass-ton of yarn in the the other.  I'm a crafty person damnit--I want to be crafty!

Hands are bad today.  Typing is a chore.  Gods forbid I need to use a comma or a "c" and I forget to move my entire hand down instead of trying to bend my fingers.  Argh!  The fingers don't want bend and my right hand looks flat.  I know that sounds weird, but if I set my to index fingers facing each other so I can see the side-view, the right one looks flatter than the other.  Like it's deflated.  Maybe it's just less swollen?  But the joints still looks as swollen as usual and both sides are still blanching equally when I try to bend them.  I don't know.  I'm too exhausted to even think about it anymore.

Sum up of my tests on Thursday in Boston

My dad drove me in.  It was his first time spending time with me while I'm in my chair.  He took it better than I thought he would.  At least outwardly.  (We've always been a swallow your pain type of family--and I've been the annoying nonconformist who wants to communicate.) He didn't mention anything and offered to push me. 

We got in early.  Like 2 hours early.  Whoops.  Traffic?  Where were you?  Got in at 7AM.  The offices open at 8.  My Barium Swallow was at 9.  So we waited and they very kindly took me in at 8:30.

It was an easy test for me compared to the last one.  The hardest part was getting changed into the hospital gown without help. 
Then it was just lay down on this table. 
Xray xray. 
Tilt the table upright.
Pound this shotglass of barium.
Xray xray.
Swallow these crystals that produce gas to blow your stomach up like a balloon.
Chug this barium.
Xray xray.
Turn on your left side.  Turn on your right.  Left side again.  Not that much!
Swallow this pill.
Drink barium until we say stop.
Xray xray.

The barium wasn't as bad as I expected.  I had anticipated sandy gritty gross horrid tasting goop.  It was thick--milkshake like.  And it didn't taste good.  But it didn't taste bad.  Maybe I've just eaten a lot of bad things in my life.  I'm bad at resisting the I dare you's and I'm good at the how much would you pay me to's.  I'd take barium over black printing ink which I rolled on my tongue in high school for a sum of 50 cents, 2 peppermints, and a ball of lint.  And it was much more pleasant than the time I accidentally drank nail polish remover--although that was followed by an epic spit-take so maybe it doesn't count.  It was better than our Condiment Hell drink that was part of some drunken drinking game we concocted involving putting everything liquid in the house (ketchup, milk, soda, pickle juice) into a cup and then competing somehow to not drink it.  Guess who drank it?  Anyway--the test wasn't a big deal and I think the Doc and Techs were amused at my good nature toward it.

Also, it came back normal.  The attending Doc said, "This is good because your esophagus looks like it is working great and we want that.  But it's bad because it's not going to help Dr. K figure things out any better."  At least I wasn't the only one thinking that.

The only bad thing about the test was that I had to fast for it and then afterward I felt STUFFED.  I didn't want to eat anything, I didn't want to drink anything although I drank as much water as I could.  I didn't even try to eat until around 3:00 and I felt like I was about to pop my stomach for putting anything in it.  Finally better now.

The Tech also checked out my injection site from last week since it's still swollen and after the test they wheeled me back over to where I got my bone scan.  Turns out that first injection that didn't work right and hurt like mad was them injecting the radioactive dye into the tissue of my arm instead of into my vein.  Two of their docs checked me out and said that my body should absorb it within a week.  The lump is still really hard and painful, but I'm waiting it out. 

Also the first doctor was a sweet looking young woman--late 20's?--who when I showed her my arm (I'm poking at the lump mind you) asked me very politely, "May I exam you manually?" 

Why, yes.  Yes, you can.  Please.  That's why I'm here.  Poke it!  I am.  Anyway, I liked her.  I just don't remember ever having been asked that before.

From there onto the Pulmonary Function Lab.  It was 9:30 and my test wasn't until 2:00 but what the hell.  They were free so they took me right then.  It was pretty awesome of them. 

Blew into a huge mouthpiece tube thing.  A lot.  The tech kept saying, "Blow out.  Out! Out! Out! Out! Out! Out! Out! Out!"  And I'm like damn!  There isn't any more!  I'm gonna turn inside out soon!

I have no idea what the results were of that test.  When I was leaving I asked a little breathlessly, "So how'd I do?" and she said that I'd preformed the test correctly as asked but that's all that she could tell me.  Okay then.  Just have to wait until next week. 

Seeing Dr. B, my primary care, on Monday and going back to see Dr. K for hopefully some answers on Thursday.  In between, hope to go to the beach!  I feel like swimming.  (And knitting, but c'est la vie.)


  1. I can't knit at the moment either. There goes a major form of stress relief. My OT is working on getting me back to doing things but it is slow going. Dictation software FTW.
    I had to smile at the tech going "Out! Out"! each time I'm at the pulmo they tell me that and I'm swaying, the world is turning black at the edges, and I'm out of breath and they keep cheerleading. I'm supposed to almost pass out during the test? Yes. Okay then.
    I hated my barium swallow. I think I felt full of air for days.
    I hope you enjoy the beach!

  2. Yup. It's a bummer. Sorry that you too are looking forlornly at your yarn. Once the docs find out why I can't use my hands, I'll have to ask about seeing an OT. They sound very helpful.

    With the PFT, after a while of the OUTOUTOUT! I just felt like I was sitting here looking at her like, now what? I was trained to sing opera when I was younger. I know how to blow air out of my lungs, but there totally isn't any more in there, so what do they want?
    Thanks for the comment! Hope you are well where you are.

  3. About the wheelchair stuff and other advise, I'll gladly take it.I fly by the seat of my pants and make things up as I go...You're more than welcome to dish out any advise/opinion you want. It will be welcomed. :)