Saturday, August 21, 2010

Our loving conversations

The other night while trying to fall asleep.

Me:  You know that my pill load is up to 11 on a normal day?

Wife:  Wow.

Me:  Yup.

Wife:  You're the sick member of the herd just asking to be picked off.

Me:  Yes, indeed I am.

Wife:  (using her best creeper voice) You want me to pick you off?  Get it? Huh?  Get it?  Pick you off?

Me:  (long silence) ...Please don't pick my nose.

Wife: A-ha!  (Attempts to pick my nose.)

Me:  (Deflects.)

Commence laughing and cuddling.  You know what--I live a pretty awesome life. 

Wednesday, August 18, 2010

Square One

On February 17, 2010 I see Dr E, my first Rheumatologist for my weird-ass-hand-crap.  He looks at my hands and at my bloodwork.  He tells me I probably have an autoimmune disease.  His best bet is Scleroderma, but he can't be sure at this point.  He orders repeat bloodwork because what the hell, that's what you do. 

March 17, 2010--I see Dr E for the results of my bloodwork.  ANA is still positive.  Now he's saying either Scleroderma or Lupus.  He offers to put me on Plaquenil, a malaria drug now used for autoimmune diseases, but recommends that I wait until April to see the specialist at Tufts.


August 18, 2010.

That'd be today.  I got a phone call from Dr K at Tufts to discuss how my hands are doing off the steroids.  I told him they are shitty.  (Except I said it much nicer.)  He offered to put me back on a low dose of prednisone, but I told him I have an infection (see below) and he said that I should probably stay off them for now then.   I told him what the neurologist had said about the neuropathy.

Dr K said, "Hmm.  Well then, we're probably looking at an autoimmune disease."

I said, "Okay."  This is not really a surprise.

Dr K said, "I'd like to put you on Plaquenil.  Have you heard of it?"

I said, "Yes, indeedy.  Funny you should ask."  (except I didn't actually get snippy.)

So yeah.  It seems that after five months of running around, blood tests, xrays, injections of radioactive dye, shotglasses full of barium, tube blowing, side effects, try this drug now this one now this one, waiting, panic attacks, 'roid rage, electric shocks, extreme phone tag, and more nights than I can count trying to go to sleep at night knowing that both M and I are laying there wondering if I'm dying--I'm right back where I was on that March 17th appointment.

I'm pretty sure that's what just happened.  Maybe we know a little bit more about what it's not, but we still don't know anything else about what it is. 

My brain is battling with this one.
This is good!  We are making progress!  We are ruling out things.  Keep on chuggin!  And then.  What the fuck!?  We only  ruled out stuff that they brought in after making no progress on the first it's-autoimmune! decision.  This is bullshit!  Five months of specialists and full body testing in Tufts Medical and all they can come up with is EXACTLY what one Rheumy came to the conclusion of after one goddamn bloodtest?!?!  You get the idea.

I'm starting the Plaquenil tomorrow.  I have to see an eye doctor within the month though because Plaquenil's one major side effect is blindness.  That's a pretty crappy side effect, but it only happens to 1 in every 100 persons and can be prevented by seeing an eye doctor when starting and then every 6 months to make sure the medicine isn't building up in my retinas.  Can do.  Will do.  I like seeing.

Also, M brought me to the clinic this morning where I peed in a cup.  I have a urinary tract infection.  There's a first for everything, I guess.  Stupid prednisone.  They put me on antibiotics and I'm supposed to call back on Monday to check on the extended results of my cup-o-pee. 

This now puts my daily pill intake at 11, as long as I don't need my anti-iflamatories (2 a day), my painkillers (another 2) or my sleep aid (just the 1).  I just kind of want to pour them all in my tub and take a bath in them.  Maybe that would get us somewhere.

Tuesday, August 17, 2010

EMG: Sounded scary--really wasn't.

M drove me to have my EMG done on Monday.  I was nervous about it, what with the needles and the shocking and the doctors warning me that it's a "very uncomfortable" test.  It was, in fact, not that big of a deal.

The guy who did the test was another Neurologist, though he made sure to tell me that he was not wearing his "Neurologist-hat" today--he wearing his "technician-hat."  He wanted to chat about file since I'm an odd-duck.  He also said that I do not have RSD and that it seems autoimmune.  Then we got with the shocking.

I was very nervous at that point because I had been expecting him to put on some electrodes and hit a button.  No no.  He put on the electrodes and got out this thing that looked like a cross between a cattle prod and a taser.  I was unhappy about this.  But he electroded me up and pressed the prod hard into my wrist and hit a button.  Meh.  I've had worse.  My TENS unit zaps me harder than that.  It was a zap and my pinky twitched without me telling it to.  No biggie.  No pain really.  I'm not sure if it normally hurts, since he kept apologizing when he'd miss a nerve and have to redo a zap several times in one spot, but it was really no problem.

On to the needles!  I don't have a fear of needles (even after the last infiltrated IV)--I mean, I've got 4 tattoos.  Needles happen.  I just generally don't want them inserted into my muscles.  Again more electrodes, and this time rubbing alcohol.  He gave me the standard "bit of a pinch now," and yup--it was a bit of a pinch.  Normally, that shit is a lie.  To be fair, he didn't seem to be putting the needle in very deep.  I had been expecting him to shove that needle in a few inches, but this really just pinched on my left arm.  On my right arm I could barely feel it.  One time, I didn't believe he had actually done anything.  That might not be the best of signs, but what the hell, it hurt less so I'm currently for it.  That was it and he said I'd get the results when I saw the doc next month.

 And since this blog is here for me to keep track of all my medical crap--here is where we come to the PROBABLY OVER-SHARE CHAPTER.  Those of you who kinda want to read about my joints but god no--leave your organs out of it! please stop reading now.  We will return to our regularly scheduled jointy problems soon.  (I hope.)


You gone?


Okay.  So here's the deal.  A couple of weeks back when I was still on prednisone and starting to come off of it, I started to noticed that my bladder was getting performance anxiety.  Not long after my pee started to look all cloudy/murky which is no fun at all.  This is weird because that had never happened to me before.  And here I'm thinking,  Ha!  Wacky prednisone.  What don't you mess with? I was figuring that it was some odd steroid withdrawal thing and would go away.  But here I am, off the 'roids and the problem is still very much present.  And, in fact, a little worse.  Probably going to the walk in clinic tomorrow to get it checked out.  I checked my temp and it was 99.9ยบ.  I know prednisone makes you extra susceptible to infections, so I'm guessing it's a bladder infection or something.  I've just never had anything like this before, so it's weird.  I don't like it.

For those of you not familiar with the term "bladder performance anxiety" here is what I mean:

Bladder:  Hey you!  I'm gettin' full!  Y'all are gonna have to fix this soon!

(By the way, my bladder apparently talks like Cletus the slack-jawed yokel for some reason.)

Me:  Huh, yes I'm registering that as well.  I suppose I will go find an appropriate area to remedy this situation.

Bladder:  Gotta pee gotta pee gotta pee...

Me:  Here you go.  How about this.  We've been here many times before.  You know the drill.

Bladder:  ...

Me:  ...

Bladder: ...

Me:  Anytime now.

Bladder: ...

Me:  Uhhhh, what's the deal?  Are you going to pee or what?

Bladder:  I plum forgot how.

Me:  :<  That's your only job, dude!

Bladder:  A-yup.  Now if I could just remember...  uhhhhh.  Like this?  Did it work?

Me:    Does it sound like it's working?

Bladder:  Awww, I gotta pee!  I'm full!

Me:  >.< THEN PEE!

Bladder:  A-yup.  That would work.  Uh.  Hmm.  How 'bout... Naw.  'Kay, how 'bout...

Me:  Huzzah!!  Whatever you're doing don't stop!

Bladder: But--

Me:  I'll kill you!

Bladder:  o.o 'Kay.

Saturday, August 14, 2010

No to Steroids, Yes to Neurologist

So I'm off the steroids and I saw my first Neurologist.

The Steroids

No more steroids means no more mood swings, which is good, but damn do I feel run down.  I feel like a slug.  I don't want to move anywhere, I'm just too tired.  I've been keeping busy with the help of my good friend Vietnamese iced coffee.  I know this is a temporary fix, but I'm assuming the no-more-steroids-so-I'm-all-dragged-out-and-sleepy thing is also temporary.

More importantly, hands are going back to being a mess.  They woke me up a few times last night with their OW!OW!OW! throbbing thing in the joints of my fingers.  It's like they want me to wake up, clutch at them, and check the clock, because by the end of that, the throbbing has stopped.  And then they wait until I've fallen back asleep to repeat the cycle.  That's their fun game.  I guess they get bored when I sleep.

My fingers don't bend in the morning anymore.  I can't make fists until late at night and then it's not a complete fist.  I'd say I'm about how I was in March/April, but the slope seems to be pretty steep in that I'm worse today than yesterday.

The Neurologist

He was really nice.  I was nervous and a little intimidated because any doctor who chooses to deal with a person's very complicated brainmeats is clearly A. Way super smarter than I will ever be and knows it, or B. Off his rocker. 

This guy, Dr V, was really great.  He looks like a total nerd.  It's intense.  White button down shirt.  Dark dress pants.  Silver colored crew cut.  Thick glasses.  Bow tie.  A yellow bow tie with a swirly pattern on it.  Seriously, a dude who has the balls to wear a bow tie?  I was excited to meet him.

We went over all my crap/history.   He did his exam.  He did rule out Reflex Sympathetic Dystrophy.  He says he's treated that and I don't fit the pattern for RSD at all.  So that's something.  Then he kept looking at me with squinty eyes and then he'd say, "Okay, hold on a minute," and he'd leave and come back with a giant neurology text book and he'd flip through it and read and sigh and say, "Okay, hold on just a second," and he'd leave and come back with an even bigger text book.  I sort of baffled him.

He was trying to come up with a neurological disorder that fit all of my symptoms.  The best two conditions he could come up with if he were to try to encompass all my symptoms were chlamydia which doesn't really fit at all plus unless I need to smack my wife around a bit, I don't have it--or lead intoxication but I don't fit that mold either.

So this is what he came up with.  He did diagnose me with bilateral ulnar neuropathy.  (These big words basically mean nerve damage of the ulnar nerve--the one by your funny bone that runs down the side of your arm to your pinky and ring finger--and both arms are affected.)

However, he believes that my neurological symptoms are not part of/due to a neurological disease.  Dr V believes that my neurological symptoms are a result of the core problem.  As in, the core problem (which is still a mystery, huzzah) caused swelling which then compressed the nerves in my hands and wrists, damaging the nerves and causing the neuropathy.

So bottom line:  I have neuropathy caused by the core problem which is not a neurological disease.

There's just one thing.  What the deuce is the core problem!?!  

In his opinion, I have an autoimmune disease.  That's not a guess to him.  He said pretty confidently, "You have a connective tissue disease.  That's clear."  I clarified that this was besides the Ehlers Danlos and he reiterated that he thinks the core problem is autoimmune.

So now I'm going on Monday for an EMG, which several doctors have told me is "very uncomfortable."  This is to confirm the neuropathy and make sure I don't have an underlying nerve disorder.  They get to put electrodes on my arms, hands, and fingers and zap me a bit.  Then they get to insert needles into my muscles.  It's going to be a party.  I might ask if I can bring a heavily rum laden umbrella drink.

So, we're back to it being an autoimmune disease.  And if I recall correctly, that is what the FIRST doctor I saw said.

Just for laughs:

Primary care: Arthritis? See a Rheumy!
Rheumy 1:  Autoimmune!  Scleroderma!  See a Dermatologist!
Dermatologist 1: I dunno.  See A Rheumy/Derma!
Rheumy/Derma:  RSD!  See this Rheumy!
Rheumy 2:  Hmm.  Either autoimmune or RSD.  See a physiatrist!
Physaitrist:  I'm a dick.
Rheumy 2:  Uh... See a Neuro!
Neuro 1:  Definitely autoimmune.

Me:  *slow blink*  I'm tired.

Thursday, August 5, 2010

Sterioids: How to win AND lose.

I love prednisone.  I hate prednisone. 

Dr K. put me on a round of the stuff to see how it would affect my hands.  We can very easily say it affects me a lot. 

After about a week of being on it, my hands started to feel better.  The swelling went down.  The pain went way down.  I no longer felt like I was breaking joints into tiny shards while bending my fingers.  I could bend my fingers.  I could make fists. 

After two weeks, it was almost like nothing had ever been wrong with my hands.  They were still stiffer than they have ever been before.  My fingers don't stretch and bend like they used to, but the pain was gone almost completely.

And I was miserable.  Steroid mood swings?  Yup.  Got 'em.  A lot of them.  Practically 'Roid Rage.  I was anxious. I was weepy.  Crying several times a day.  It was like someone had gotten hold of my Remote Control of Emotion and was saying, "Hey, you know what she hasn't felt in a while?  Shaking rage?  Ah, here we go.  Neat.  Oh!  And it's been a while since she's had choking, sobbing misery.  Hmm, either that or a really bad panic attack.  Oh what the heck--let's do both!"

That kind of thing.  I was an emotional train wreck for a good 3 weeks straight.  I must have been hell to live with but it was like there was nothing I could do.  Like I could know inside that everything was okay and there was no need to panic, but outside I was a sobbing, retching mess.  It was during this time, of course, that I had to deal with the stupid phone call cluster-fuck of doom and the Rehab doctor who treated me like a jerk, told me I didn't have any of the conditions that I have been previously diagnosed with by several other doctors and thought I was being unreasonable by not unquestioningly accepting his one opinion against several others--and saying that I must have just misheard my diagnosis.  These are things I could handle (probably with a nice small cry) on my own regularly.  With prednisone?  I was wreck.  I complete wreck. 

It got the point during the phone-insanity that I was so anxious one night that I was feeling like I was going to be sick, but I didn't just want to give in and throw up because I had just taken my evening pills.  So I tried every trick I knew to calm down.  Nothing worked.  So I said, that's okay.  What I can do is take one of the pills that my primary care doc gave me for insomnia because he said that they also help with anxiety.  But then I thought--those knock me out.  I'll be passed out straight through past noon.  I'll miss all the phone calls of those idiot offices trying to set things straight because I had just gotten messages that they can canceled the appointment I had spent all day trying to make and I'll be too anxious to be able to call them back!  And that made me so anxious I threw up.  Great.  I am BEYOND PATHETIC.  In the end, M made me take that pill and just shut off my phone until I woke up. 

I am now on my last week of pills, taking 5mg a day down from 40mg at the beginning.  Currently I am only an emotional car wreck.  Still weepy.  Still sensitive.  Still overly anxious.  But I can manage.  And I can feel the pain starting to come back.  In the mornings, my fingers hurt and don't want to bend. 

It seems almost cruel.  I had this month where I got my hands back and it was amazing.  I could barely enjoy it though, because emotionally I just wanted to curl up and bawl my eyes out.  Chemically depressed.  And I knew the relief was temporary.  I was too scared to start any new projects, like start crocheting again, because I knew I would run out of time before I finished it.  Now I'm watching the pain creep back up on me and it's like I'm watching a car come at me in slow motion and I know it's going to hit me. 

I'm scared to go back to having no hands again.  I don't want to.  I had gotten used it.  Resigned to it.  Now I know there's this medicine that will fix it, but I know that the side effects make it practically not worth it.  Quality of life vs. quality of life. 

I saw Dr K. on Monday.  He was happy to see that my hands responded so well to the treatment.  It doesn't tell him much though.  If I have scleroderma,  RSD, or a neuropathy, he would expect me to respond like I did.  Now it's just waiting to see the neurologist(s) and he said even waiting for winter to see how things go once the weather cools down.  He even brought up that I could have atypical lyme disease, though it is very unlikely.  Questions questions questions.

He said that if my hands become unbearable after coming off the steroids that I could go back on a low dose, but I don't think I'd be comfortable doing that.  I just want to feel like myself again.  Even if that means being in a lot of physical pain.  Am I an idiot for feeling that way? 

I really just think I'm going to have to redo what I've done since last November.  Relearn how to adapt with my dumb cripple-hands once they show back up.  I'm sure it'll go faster the second time around.  It's just hard waiting for it to hit and trying to figure out all the things I want to do with my hands before August 11th.

I can't wait to be off of these stupid pills and I'm really scared to stop taking them.