Saturday, June 19, 2010

My ID says "Radioactive"

I had my bone scan on Monday.  It was kind of an ordeal, but overall it went well.  I had a bone scan when I was 11 years old or so, so I mostly knew the drill.  M's mom drove us into Boston which was a huge help since there were less bumps than on the bus and we could bring my chair.

My paperwork told us to go Floating building, floor #6.  So we did.  Floating building, floor #6 is Pediatric Intensive Care.  This is not the correct location for an adult bone scan.  Luckily we found a very nice woman to walk us over to a different building on a different floor to Nuclear Medicine.  If I wasn't in my chair, I never would have made it walking all the way over there in time for my appointment. 

Everyone was very nice.  They looked at my hands and got me set up by the gamma camera (say that 5 times fast).  The tech put in my IV; he tells me to make a fist for him and I laugh again--huzzah for being an easy stick on my left arm anyway--then he moved my arm rather quickly under the camera.  Just like when I was a kid, the injection came in a metal box with a radioactive symbol on it, but this time the nurse didn't wear a lead vest to inject it, which was nice.  They wanted to inject the dye while filming it to get an idea of the bloodflow.  When they pushed the dye, it hurt.  And they guy asked me, "Does that hurt?"  So I said yes and he said that the needle must have gotten jostled while moving my arm under the camera.

His solution?  To grab hold of my arm and press REALLY HARD on my IV.  Squeezing really tightly parallel to the needle.  OW!  But hey--do whatever you need to do I told them.  But everyone hovering around watching the screen said that they weren't getting a good flow.  So they took my IV out and went and got a booster dose of the radioactive dye. 

That's right--I got an extra dose of radiation.  I am now ready for my superpowers, folks. 

So he looks for a vein on my right arm to repeat the injection.  No good.  He's got one spot that might be a vein, might be a tendon.  So back to the left arm we go, right back in the same spot.  This time we very gently move my arm under the camera and the dye goes in fine.  Woohoo!

Then they go to take stills of my hands/elbows and the machine breaks. 


Okay, so not really--but we have to rush me over to another room to take a bunch of stills, then come back once they got the first machine rebooted to take more stills.  The techs gave me a card to keep in my wallet that states that were I to enter an airport or a government building I would set off their detection machines but that I have had a medical procedure and that while I am radioactive, I am not, in fact, an A-bomb.  It states I am not a danger to the public.  Which I almost take offense to.

Then they take out my IV and send me off for 2 hours with the assignment to drink at least 5-6 glasses of water.

2 hours and nearly 2 liters of water later, I didn't think I'd ever stop peeing.  And it wasn't even the satisfying man, that was a good pee kind of thing.  This was a I just pee'ed and I can already feel it starting again.  I'm going to be back in here in 5 minutes.   I probably could have just sat there for an hour or two tinkling constantly, but nope--gotta take more pictures.

More stills of the hands.  My wrist lights up bright white.  We don't know what this means.  By now we can see my hands on the screens between stills.  All black but when I put my hand under the camera you can see a mass of sparkling stars in the shape of my hand, all drifting. 

Then time for the full body scan.  Lay on this plastic table.  Don't move for 30 minutes.  I bargain for pillows to put under my knees and then we have a deal.  The scan goes fine.  M and her mom look at my skeleton while it scans.  I'm very abnormally shaped.  Because I'm missing vertebrae and my lumbar spine is fused, I have almost zero torso.  My ribs often get caught on my pelvis.  I'm boxy.  M says my legs are about 1.5 times the length the rest of me.  She says I look like a computer tower on legs.  But we always knew I was super-weird on the inside.  On the outside?  Awesomely long legs. 

Then mores stills (with peeing in between) of my hands and elbows.  Finally I'm free to go. 

Time I entered the hospital? 9:30AM
Time we left?  3:30PM 
A long day for one test. 

Anything since then?  Sure.  Dr. K's office never called me back about scheduling my appointment (surprised? NOPE).  Dr. K asked that I make an appointment about one week after my last test--making that the first/second week in July.  He said they'd have to squeeze me in.  I have been trying to do this since May but all the secretaries just transfer me around until I end up at a voicemail that never calls me back.

So I called them again on Friday and explained my situation for the 80th time.  I got transferred to Dr. K's voicemail (again) so I left him a message (again) and I'm still waiting for him to call me back.  The secretary did advise me to book the earliest available appointment--September 22nd.   I'm exhausted and my hands hurt.  I just want to know if I have Scleroderma or not.

PS: I had a SUPER impressive bruise from my IV.  Finally better now.


  1. Hey,
    So I don't know how to send messages without a comment. I'm waiting for funding to go through for my AFO's first before I apply for the wheels cause I needed the AFO's like two months ago. I'm also waiting for the ministry to recognize me as disabled so I can get more funding etc. The set of wheels I'm getting is only temporary until I can get a proper one sorted out. I'd only be using it when I need to be walking around a lot which will be with friends so they can push me. It's also a collapsible and pretty light-weight. Yes, I know I need to see a seating specialist and get measured (I used to fight with them at my old job, haha).

    Can you give me your e-mail address, or are you on facebook?

    Thanks for all the info. much appreciated :)
    It's so nice to know other bendy's out there.

  2. my address is theguineapigmafia AT gmail and I am also on facebook and you can search me by my email, right? You'll know you have the right person if a blonde with a crazy Polish last name shows up. :) Would love to chat more. I don't know enough bendy folk.