"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.)

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. 

MY SUPERPOWERS! 

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.

Warning: woozy, rambling post

I'm going back up to recommended 3 times a day dose of the Gabapentin.  The nerve pain from my stenosis and the this new shade of pain from the Scleroderma/RSD/Who The Hell Knows has been getting worse, so I figured what the heck--I'll go up to the full dose.  That's what this medicine is supposed to help anyway and I was at the point that I would rather some twitching to the nerve pain. 

So here I am day 3 into the full dose and no twitching but damn am I woozy.  It is working though.  The edge has really been taken off of my spinal stenosis pain and the pain/burning/tingling/stinging in my hands has really gone down.  My fingers are still really stiff in the morning, but the --Wow hold on, spinning.  Okay.  Better now.  Why do I always spin to the left when I'm dizzy?  Anyway, the decrease in pain lets me really work my fingers into bending earlier in the day.  Which is good.

Only problem is I feel too drugged up to do shit. Half the time I'm too dizzy to read.  Sometimes I just lay in bed and hold on for dear life.  Before I went on this stuff I was super clumsy with my hands.  They didn't bend, they didn't grip, they didn't do what I wanted them to.  If I used one hand to pick up a glass, I'd bash it into my face.  Fine motor skills?  None for me, thanks. 

Now I can get them to bend, but not really grip all that well.  And my coordination is so much worse.  Whenever I do anything with my hands I feel like a heavily inebriated newborn trying to pick up ice cubes with salad tongs.  Everything is a goddamn challenge.  

And not always in the obviously ways like when I need to write something down and I can't open the stupid pen, or grasp it hard enough to make marks on the paper without dropping it.  Sometimes it's just this weird paralysis.  Like I can be all drugged up in bed trying to read, but my eyes won't focus and I'll say, "Hey, why don't I go outside.  I like outside.  It's not raining.  Let's do that."  And then I sit there in bed, with the book I've dropped and I don't move.  And I say, "Hey, idiot.  Move.  Get on up.  Let's go outside." And nothing happens.  I stare off into space, blinking slowly like it's a chore. I try to start slower, "Let's find shoes!" Still nothing.

I've never done recreational drugs.  Not my thing.  Feeling this messed up is not something I'm into.  And the weird thing is that I go through cycles of feeling incredibly sedated and then all of a a sudden I start feeling like, "Shit, I got things to do.  Lots of things!  I need to clean, and take a shower, and water the plants, and post about it, and fuck! let's bake some cookies!"  And I need to gogogo like I'm on speed or something.  And what's dumb is that when I get like that I start doing things that I know I shouldn't do joint-wise because it doesn't hurt right now and I used to be able to do this just fine 6 years ago so why not?  Because it's going to REALLY hurt later, dude.  That's why.  But I almost never listen to that little voice of reason and end up in bed later with a hip that is gentle breeze away from dislocating from overworking it. 

So that's my life right now.  Super exciting, I know.  9_9   Also, I've been waking up with that nasty new pain sensation spreading to my elbows and pretty bad in my right foot.  I don't know what it means and I'm too doped up to care.  Also I called Radiology again to check in since I hadn't heard anything.  She seemed annoyed to hear from me, but I just told her I wanted to make sure that I would be all set on Monday since when I last heard my doctor hadn't sent down orders for my test.  I got an exasperated sounding, "Yes!" so I'm done calling anyone for a while.  I feel too clumsy talking anyway.  I wonder if any of this made any sense. 

Sometimes it's hard to be a patient patient.

This week has been a Communication Fail.

I talked to Dr. K a while back when he told me he would see if he could move my test dates up earlier and that if I hadn't heard back to call the office on Thursday.  Thursday rolled around and no call, so I dialed them up.

I called the office and they didn't know anything about it so they transferred me to the front desk
who didn't know anything about it so transferred me to Dr. K's secretary
who didn't know anything about it so she transferred me to
Dr. K's voicemail where I asked him to call me back.

And each time I'm telling them the story and they each just go, "uh... hold on let me transfer you," and I do it all over again.  Also I told them that Dr. K wanted me to schedule an appointment for after the tests and they told me, no, they would call me later to set that up.

So Dr. K called me back (that day, bless him) and apologized that he had thought his secretary had called me to let me know that he can't move things around--that I have to work with the front desk.  Okay, I can do that.  But now we've lost a week to me sitting around thinking things were getting done.  Ugh.  Also, he told me not to have them call me later and that I should set up an appointment with them after I know the test dates.

I let him know the twitching stopped once I was back down to a 2x a day dose, and that the stiffness had spread to be almost equal on both hands.  He told me that while he couldn't promise 100% that we would have answers after these tests are done, he did say that Reflex Sympathetic Dystrophy would not spread that fast, but that Scleroderma would.

So for my own sanity, I've decided that in my mind that this is what I have.  Right now the prospect of not getting answers after all this, of ending up with a "we don't know"and living with the "well, they don't know yet, waiting for my appointment" is just too damn painful and I can't handle it.  I can handle the prospect of having Scleroderma because that's something I can fight.  I can set my mind to this beast and kick its ass.  That's not something I can do when I don't know where to aim my boot.  My counselor said that this is not an unhealthy method of coping for my situation and that I'm handling it very well and that she's amazed that I'm still so positive.  I know I would not be in this good of shape, mentally, if I was getting through this waiting time going, we don't know, and hell we might never know and then they'll never know how to treat me.  Worst case scenario: they tell me it's not Scleroderma and I go, YAY! because I sure as hell don't want Scleroderma so there would at least be a positive to it.  And if I really do have it, I'm prepared.

ANYWAY

So then I call the front desk and they totally don't know what to do with me.  They transfer me over to Dr. K's secretary again and tell me to leave a message and she'll call me back, and if she doesn't I could call later and ask for Betty.  Can do.

I let several days go by keeping my cell with my constantly before I call on Monday and ask for Betty who seems frazzled that I'm calling since she's sure she had called me.   They have moved up my bone scan to the 14th of June since that's the one Dr. K wanted the soonest.  Okay.  Fantastic.  So it's still two days of testing, just not back to back.  Awesome.  

So I call the Radiology department today to ask if there is anything I need to bring or do to prepare for the test since it got moved up and I was unsure I would receive any paperwork they sent out on time.  They don't have orders for my test yet.  Uh-huh.  Okay, so she transfers me to Rheumatology who don't know what to do with me, so they transfer me to the secretary who takes my phone number who says she will look right into it and call me right back.

5 hours later, I call Radiology again to check in.  They don't have my orders yet.  She said she would call up to Rheumatology and take care of it.  That's the last I heard of this matter.

Then I called up scheduling for Rheumatology to get my appointment.  They only date they had available was this Friday (not the best since my last test is in two weeks) or in August.  I'm not sure what the point is of moving my tests up because you don't want whatever is wrong with me to wait that extra two weeks when you're not going to see me for another 2 months.  I briefly explained that my doctor had said that he wanted to see me a week after my tests and had expressed that even that was longer than he wanted, so she said she would email the secretary and that I'd be getting a call.  Sigh.

I do want to point out that every single person I spoke to was polite, courteous, kind, and in some cases very warm with, "Oh, honey, I'll look into that and we'll call you," type things.  And I'm pretty darn sure that my voice was about the same.  I was very careful to try not to sound frustrated when repeating my story for the 4th time.  I feel bad complaining--I don't know their situation and they don't know mine.  I shouldn't expect them to have same urgency I do.  It's not their fault, and hey! maybe if I sound super nice on the phone, they won't pass the buck!  I'm a cute buck, after all.  I just really wish they'd call me when they say they will.  The doctor can do it, you can too!

So now I'm waiting again.  If I don't hear anything about the bone scan, I guess we just go in on Monday and hope for the best.  And look super-cute with a dash of pathetic which M says I am naturally good at.  For now, I'm all worn out worrying about it.

Bad Hand X 2

I'll keep this short since typing is getting harder and harder.  My left hand has rapidly become about as bad as my right hand.  The right hand is still more swollen and discolored, but the left is getting there.

In the morning my fingers don't bend at all and the skin feels so tight.  By noon I can force some movement into them on good days.  On bad I have paddle-hands all day long.  On rare amazing days I can move my hands almost like I could a few months ago.  I feel like this is all happening so fast.  I talked to Dr. K and he said that Reflex Sympathetic Dystrophy would not spread this fast, but that Scleroderma would.  Still waiting to do more tests before we have any definite answers.  The answers are the only thing that isn't going fast, it seems.

These pictures were taken around noon today.  The bottom one shows how much I can bend my fingers.

Believe it or not, I'm actually really trying to bend my fingers in this one.