Monday, December 20, 2010

Perspective can really screw with you

It's snowing outside right now.  Winter is really here and I've been feeling it in my joints and hands.  My fingers keep dislocating today which I figure really should be impossible with how swollen they are.  I can barely bend them--how can they bend out of place on with the tiniest pressure? 

I'm losing ground on my hands.  It's because of the winter, I know.  I wake up too early and turn over, reach to bring the blankets with me and there it is: my fingers don't bend.  I can't grab the blanket.  My hands is just this throbbing paddle.  Like a little, "Good morning.  You have this disease, remember?"  And right now that freaks me out.  It didn't a month ago.  But a month ago, I could use my fingers before 2pm.  I'm full up on anti--inflamatories, epilepsy drugs, and malaria cures but winter is bringing in the breakthrough stiffness.  I'm sure it will go away, but I'm just buckling down for a rough ride 'til spring.

And I don't have a doctor yet.  I know I should probably make that call soon, but I just keep putting it off.  I keep hearing the bad doctors in my head.  I'm not in the mood to train another one to listen to me.

I had my meeting with Human Services.  They needed me to fill out a bunch of paperwork, but I could barely hold a pen.  She spent time filling it out for me, so all I had to do was sign.  They gave me emergency funding to get through the month because of the stupid SSI debacle.  Now it's just more waiting.  

My friend recently posted on Facebook a picture of her hand with a bandaid on the tip of her ring finger.  Her post read, "My double finger scroll finger is out of commission. Never realizing how often I did this before; I am amazed by my right hand ring finger's importance. Show some appreciation to this finger today Mac users."

I read that and I couldn't stop laughing.  It seemed so ridiculous.  Like if Paris Hilton were to post about having to wear the same pair of jeans twice and really gaining perspective from it.

And then I couldn't stop crying.  It's funny how my little Pity Pigmy only sneaks out of the cell I've locked him into when I remember that things aren't like this for other people.  I forget and think this is just how things are.  That my body isn't that messed up, but I guess I kind of am.  And other people aren't like this.  That losing one finger can really throw off someone's day.  Appreciate everything, everyone. 

All I want to do right now is do things with my hands.  As soon as they start moving in the afternoon it's time for stretches and exercises, then I crochet until they swell up again at night.  It's like I need to make things out of nothing.  Need to take a ball of yarn and make something that will keep my wife warm.  Need to take a pile of old newspapers and flour and water and build things.  I know it's transparent in motive but it's a very strong need.    I'll hopefully have some pictures posted soon of my cripply creations.


Trying to stay positive like the rest of my bendy buddies.  I really wish I could find a bendy group near me.  Sometimes it feels hard to hold each other up from afar. 

Thursday, December 2, 2010

Never been anywhere

As I posted in my last entry, I have no health insurance because I was given false information from a Social Security rep (mainly that I wouldn't lose my health care) and the overall response from every agency I have spoken to (Social Security, local Social Services, & a legal agency) has been a unanimous, "That's too bad.  Oh well."

So now I am reapplying for Medicaid.  I got a letter that I need to have a meeting at the local Social Services building.  It's during normal business hours, meaning all my friends work and can't take me.  But I have to get there.

I'm new in the state, disabled, and trying to figure this shit out.  Phone calls ahoy!

The local health center that has a transportation service can't drive me there because it's not a doctor's appointment.

The other local transportation service for the disabled only takes people who have Medicaid cards.

There is a bus I could take from the bottom of my street to a restaurant on the street the building is on.  The buses are handicap friendly.  But I have to get to the bus stop.  From my place it's 0.6 miles to the bus and it will drop me 0.6 miles from the building I need to get to.

For someone in a wheelchair in New England December, that's a fucking long way.  Not to mention the way back would be a very steep hill.  And I don't know if you've ever tried to wheel a chair uphill with two bum shoulders and almost no grip strength in your hands but it's a really sucky way to spend the next 4 hours.

I could take a cab.  With what money?  I'm still on my "continuing rate" from my last residence (an amount totally inaccurate because of a my dolt of a case worker, but that's another, "Oh well") so my monthly benefits are $40 less than my half of the rent for the month.  Forget bills and food.  So cab fare?  For a 20 min ride? Both ways?  I considered calling a cab to take me to bus stop then taking the bus to the next stop and calling another cab to take me the last 0.6 miles but this seems insane.

There is a system in the bus company to help disabled people get to and from the bus stop--if you carry a Medicaid card.

If I was all alone, I don't know what would do.  As it is, I'll be okay--someone is taking me to my appointment.  Not sure who right now but, one of my amazing friends will take off from work to get me there.  I feel pretty awful about it.

I have never been anywhere on my own.  Ever.  It's embarrassing.  I really have no independence.  Never been able to drive anywhere alone and now I can't drive.  Never walked anywhere.  Never taken public transport on my own because I fall, I dislocate, I get too dizzy to see, my arms and hands get too painful to wheel, and I generally need help all the time.  That's hard for me to admit.  I didn't think about it until this whole episode. And it kind of hurts to have that come to the surface.

It's amazing how much applying for help really makes me feel like shit.  Just as Benefit Scrounging Scum wrote in her most recent blog, it's really damn hard to have to, "justify how absolutely, utterly shit you, everything about you and your entire existence is."

But the truth is there is no system for people like us.  They think there is.  We assume there is.  There kind of is, but it's made by people who don't have to use it.  So they miss things.  They don't quite get it right. 

It's really scary to me that I've never been anywhere alone.  Like I'm missing out on some major passage in life.  Like I'm really just this big scared baby--even though I know that it's not true.  I know that I'm a strong person but for some reason those two things--being strong and having no independence--clash in my mind.  

Monday, November 22, 2010

So that's how you raise low blood pressure.

Funny story:

So, as I mentioned, there was a sudden moving happening.  M was made a fantastic job offer and had 2 weeks to find an apartment, move, and start work.  Yikes.  HUSTLE TIME

Originally, while her new job is in NH, we decided to move to a place in MA so there wouldn't be any change over in my benefits, no crazy paperwork, no lapse in medical care, and I could keep all my doctors. 

But then we redid all our finances this time including MA taxes and ugh--it didn't look like we'd be able to afford much of anything as far as a place goes.  Especially considering the gas needed for M's 30 minute highway commute.  I didn't like it.  We visited the town with the shortest commute.  We both hated it, but didn't say anything.

So I decided to do some checking around to see how hard it would be for me to move to NH.  The internet was damn useless.  The Social Security website was impenetrable.  I called my case worker at the local Social Security office, but I didn't hear back from her for days.  And this shit was moving fast.  Needed to know now.  I ended up calling the general 1-800 number for Social Security and jumped through all the necessary hoops to talk to an actual person.

I got a hold of a guy named Cedric.  Nice guy.  I asked him exactly what I'd need to do to move--just how hard it is, what benefits I'd be losing, how I'd get health care.  Cedric looked over my case file.  Told me that I was getting X amount from the federal government and x amount from the state of MA.  Leaving MA would mean I'd lose that smaller amount, but that NH would provide x amount so the overall difference would be me receiving $45 less a month.  We could swing that. 

As far as health insurance, his answer was a godsend.  He told me that as long as I was receiving federal disability benefits, I would be covered medically anywhere.  His example, "You could move to Nevada tomorrow and as long as you gave us a call to let us know once you got there, we'd send you out a new Medicaid card in the mail."

I was in shock.  I made him repeat this info about 5 times because I just couldn't believe it.  Including making him double check my file that I get SSDI (I do) in case I had gone crazy and made that up.  I'm pretty sure I cried a bit.  I mean, sure I probably wouldn't be able to see my doctors (never know though) but we could move wherever we wanted!  Close to her work!  Not in a crappy town!  Best news of the week!  I told everyone!

We found an awesome place and we moved.  I'm here now.  It's a totally awesome apartment.  We love it.  Great town.  All birch trees and train whistles. 

Right in between signing the lease and the actually moving date, I finally get a call from my case worker.  I let her know about the move and we go over the math again.  She reads me back incorrect information about my current living status.  Info that led to me getting much less than I should have been getting.  We correct that--woohoo!  Then she factors in the moving info--higher rent, more bills, "But, it's New Hampshire," so the final number is $100 less than my original number in MA before the correction.  How the hell?  She basically hangs up on me.  I freak a bit.  But M assures me we can still swing it financially.

We move.  Ouch on the joints, but great to be in a new place.

Then I call to check in with the NH Social Security office to double check on that $100 loss I've got.  We go back over the numbers.  Apparently my old case worker was a complete mush brain.  She put the total amount of rent in the space for how much M was paying, my half of the rent in the slot for my total expenses, and somehow had it down that M was paying me $250 a month for food.  WTF?  This new woman fixed all that and now I will be getting the correct amount which is more than originally!  Woohoo!  Good news!


Then she wants to make sure that I know that by moving into NH, I have lost my health insurance.  What?  No, in fact, I didn't know that.  Being told the opposite was the REASON we moved here.

Well, most states will automatically give you Medicaid if the federal government has deemed you disabled.  Not New Hampshire.  Live free or die.  They require you to reapply for state Medicaid.  On a good case, that's a 3 month process. 

I called their department and literally gave them a sob story because by then I was in full panic mode.  They told me to send in an application.  I did. 

Apparently even though I was given false information by a federal employee which led me to lose my health care, I have no other recourse. 

Bendy-person NOT happy.  Bendy-person has rage.

I might not be so mad if I wasn't sick.  This isn't like saying, okay just be sure not to break your leg for 3 months, healthy guy!  I have these things called incurable conditions/diseases.  They are degenerative.  I'd rather not let them run rampant. 

I guess I am just really mad because they don't seem to or are not allowed to give a damn.  Disabled, generally means needs to see doctors, asshole.  I'll be okay because luckily I got a mega-shit-ton worth of my meds to last me through the move and finding new doctors, but not everyone can do that.  I got practically tricked into this situation.  What if someone needed constant treatment like chemo and they got put in this situation.  Then what?  They wait 3 months and hope because, "oh well that's really too bad--I'm sorry, but that guy didn't know what he was talking about"?    That makes me hella blood-boiling mad.

Deep breath.  I know that I will be okay.  I'm crazy stubborn and can tough this out.  There is a chance I'll be able to go on M's insurance once she gets it through her new job.  Just depends if they don't deny more for being super-crippley. 

(I'm not really telling people about this.  I guess I'm too scared about the whole thing.  I don't want people to know that it's happening.  Maybe once it's over and I'm covered again.  So those of you who know me in "Real Life," [all two of you, I think], would you mind not spreading this around?)

I'm sure that this is for the best somehow.  That living in MA would have led to something worse happening.  That I had to be lied to get up here.  That where we live is where we belong.  I have enough faith to believe that.  It pays to be a crunchy pantheist.  But I'm still mad.

Monday, November 8, 2010

Sudden Moving!

Sudden change in living arrangements!  M got a job 1.5 hours north of here and we're heading up!  She starts 2 weeks from today.  Today she found an apartment up there and a week from tomorrow we move. 

Until then--PACKING.

After then--UNPACKING.

Things will be a tad busy.  I will be rather absent on here.

Hope you all are well!

Saturday, October 16, 2010

A fear I had

I finally heard back about the lab work I had done last month.  I had called the nurses' line a while back to get my results and the woman literally read me off the abbreviations and the resulting numbers from the tests but couldn't explain them to me besides to say that my liver function was low.  So I had a mini spaz attack and called Dr. K.

Apparently having low liver function actually means that the number that would be high if my liver was failing, is low.  Which usually means you are a smaller person.  (P.S. I'm five foot zero.)  That would have been nice to know.

But everything else is fine.  No anemia, kidneys are holding, all that jazz.  Woohoo!

Anyway, the low blood pressure thing has still been giving me trouble.  Dr. K recommended I talked to my GP about that since it's likely EDS related and gave me the very popular phrase these days, "By now, you probably know more about this than me."

So I was at a friend's reading the other day and I had arrived a tidge late so there weren't any seats left.  I was leaning against the door frame until my back hurt too bad, then I would squat until my legs hurt too much then stand up and lean until my back hurt.  You know, rotating the pain.  And the whole standing after squatting thing is not the best plan when your blood pressure is dropping, what with the room spinning and blurred vision.

I was feeling pretty faint, and I had this fear.  Now fainting in public is something I'm scared of doing in the first place but see, I was standing/squatting next to this college kid sitting in a chair taking notes and I had this fear that I was going faint on him.  Not only that but I was going to faint into this kid's lap, (maybe breaking him--he looked scrawny) and my ass would hit his pen and it would write something in his notebook.  I would write in his notebook with my fainted ass. 

Then this kid would be walking around with some little scribble thing that was written by a fainting girl's ass. 

That was my very specific fear.  And it kept me going.  And I didn't faint.  Which is what I was going for in the first place.

Off tomorrow for a few days with the wifey to celebrate our one year wedding anniversary.   Which is even better than not writing in someone's notebook with an unconscious ass.

Friday, October 1, 2010

Tips for raising blood pressure?

I know.  It's a weird question.  

I haven't been online in a little while.  I've been feeling pretty awful.  Ah, orthostatic hypotension, how do I loathe thee?

I'm almost constantly dizzy, headachey, nauseous, and crazy amounts of fatigued.  When I sit up or stand up it all gets 1000 times worse--my vision goes all wonky and blurry and my headache throbs even worse for a few seconds.  It's been really dumb. 

My blood pressure has been bouncing around.  Generally it's been 85/50 but sometimes down to 70/52 and sometimes up to my normal 100/60.  When I checked right now it was 97/42 with hr at 73bpm. 
Dysautonomia has never been mentioned in my case, but my doc is aware of my symptoms and the EDS. 

I feel really tired.  For a couple of days there I was getting pretty scared about how utterly crappy I felt but my pressure went up for a few days but now I feel pretty gross again. 

Currently I'm trying to eat a bunch of salty foods and increase my water intake even more.  I'm pounding Gatorade and V8 and eating canned soup and frozen foods.  These are things I don't generally eat.  I'm a water and salad girl.  I'm that freak who likes to eat healthy foods (with a side of cake), so getting free reign to eat all the ramen I want isn't fun-time news.

Anyone else dealing with these kinds of issues?  Got any tips on coping?  Or ways to take in salt without eating a pound of pretzels?  Because while that would be tasty, I've worked hard to lose about 20 pounds this year in a healthy way and I don't feel like gaining it all by because of doctor mandated ramen. 

Also, I started on celebrex and now I have really bad insomnia.  Like, why the hell and I laying down at all, this is stupid.  Why do I even own a bed thoughts at 3:30 AM.  Even while on my SLEEPING MEDS which normally knock me out like a brick wall hit me.   I'm taking myself off it for a few days to see if I sleep better. 

Friday, September 24, 2010

Undifferentiated Me.

So I went to Tufts again not expecting much for once and walked away with a diagnosis.  Dr. K is going with Undifferentiated Connective Tissue Disease. 

Why do I always have to get the conditions with tongue twister names?

Basically, I have an autoimmune disease that doesn't fit the parameters of any established autoimmune disease.  Right now, it is my very own customized disease.  Way to go, Immune System.  Way to be an individual. 

Now, there is a chance that I have an early form of another disease and my condition will evolve into SLE or Scleroderma or whatever.  In that case, I really had immature Lupus.  Baby Lupus before it grow up into Big Bad Lupus.  Kind of like in Pokemon.  (If I'm understanding how that works.)

There is also a chance it will never evolve into anything else.  That this is it.  In that case, I have a weird autoimmune disease that only affects my hands.   Dr. K says that the fact that my condition has remained "stable" (as in not spread to any other organ system) is a good sign that it may stay like this.  If I can make it to two years, I'll be in even better shape. 

We're repeating some blood and urine labs to see where I am and to check my kidneys because of my WTF bladder.  Dr. K is putting me on Celebrex to see if that can help with the constant inflammation of my hands. 

I also have to up my water and salt intake since my blood pressure at the doc's office was 85/52.  Eek!  I knew I had been dizzier recently but I just figured it was the medicine I'm on.  

When I woke up this morning I was feeling extra dizzy and when I reached up above my head to get something off a shelf, I really thought I was going to pass out.  The world spun like you wouldn't believe, my vision went all blurry, I was sure I was going to puke everywhere, and my head starting throbbing like mad.  No more raising my arms up.  Forget that. 

Also, I have tennis elbow in my left arm.  I'm right handed.  And I don't play tennis.  What the hell?  I swear to any god you like, my body just gets bored finds some kind of trouble to get itself into to keep occupied. 

But hey!  Answers!  Thanks, world.  It's appreciated.  :)

Friday, September 17, 2010

2010 National Invisible Chronic Illness Awareness Week

I filled this out last year as part of Awareness Week running from Sept 14-18.  Thought I might fill it out again this year to see what's changed.

Please keep in mind as you go about your days, many people who don't look sick are.


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
Type III Ehlers Danlos Syndrome (Hypermobility Type) (often shortened to HEDS pronounced "heads". come on, that's funny.)
Lumbar Spinal Stenosis with congenital lumbar spinal fusion
A Mystery Autoimmune disease (Scleroderma? Lupus?  I dunno and the docs dunno either.)

2. I was diagnosed with it in the year:
HEDS: 2009
Stenosis: 2008
Autoimmune: Uh... working on it.

3. But I had symptoms since:
HEDS: 10 years old
Stenosis: 2008
Autoimmune: 1 year ago

4. The biggest adjustment I’ve had to make is:
HEDS: Learning to walk without dislocating--Still haven't figured it out.  And when that doesn't work, learning to deal with the condesending smiles I get from strangers when I'm in my wheelchair.
Stenosis: I can't lift anything over 20lbs.  You know how little 20lbs is?
Autoimmune: Learning to write, type, bathe, eat, dress, hold a cane, and wheel my chair without the use of my fingers.

5. Most people assume: I'm a trainwreck and there's just always something wrong with Kris.

6. The hardest part about mornings is: waking up and taking stock of what joints have come out while I slept and putting them back in place while I'm still really groggy and sore but without bending any of my fingers.

7. My favorite medical TV show is: I'm not a big TV person even though I could use a House in my life right about now.

8. A gadget I couldn’t live without is: my cane.

9. The hardest part about nights is: finding any sort of comfortable position. The one or two positions that don't hurt my back are guaranteed to dislocate my shoulders. I never sleep more than an hour or two straight (unless I take something to knock me out) because I've got to be resetting my arms.

10. Each day I take __ pills & vitamins. (No comments, please): As little as 9 and as many as 12.

11. Regarding alternative treatments I: find that meditation is still the best way to control my pain when my meds can't touch it (and at other times in general).

12. If I had to choose between an invisible illness or visible I would choose: It's all pro's and con's and I can't get behind choosing any illness.

13. Regarding working and career: I want to work so bad.  It kills me that I can't.  I just keep hoping that one day we'll figure out some treatment plan that works.

14. People would be surprised to know: that I'm okay talking about what's going on with me.  I used to not be.  I used to be sort of embarrassed about it.  But now, this is my world.  Knowing me is about knowing this--just a little bit.

15. The hardest thing to accept about my new reality has been: when I wake up, I never know just how bad or how good I am going to feel that day.  All plans are up in the air, always.

16. Something I never thought I could do with my illness that I did was: graduate college, garden again, and crochet/knit again.

17. The commercials about my illness: PFFT.  There are no comercials.  Most DOCTORS don't know what HEDS is.

18. Something I really miss doing since I was diagnosed is: picking people up when I hug them. That is really hard not to do and I miss it a ton. (This one is still REALLY true.)

19. It was really hard to have to give up: applying to jobs, hiking, running was cool, going for long walks, not having to remember what pills I have to take when.

20. A new hobby I have taken up since my diagnosis is: bonsai. They sit there; sometimes I water them. Sometimes I prune them. Oddly satisfying.  Plus I blog now.

21. If I could have one day of feeling normal again I would: I'd spend the morning at the beach then take an afternoon hike in the woods.

22. My illness has taught me: that there is nothing in this world that has an ass I can't kick.

23. Want to know a secret? One thing people say that gets under my skin is: when they say nothing.  When I walk/hobble/wheel into a room and I'm worse than normal/before and people ignore it, that's hard.  I feel like a dick bringing it up at those times because they mean well, but you know what?  That is what is new with me.  It sucks but this is what I do.  When people ask, it shows that you care.  I won't think that you pity me because if I thought you would, we wouldn't be friends.  OR when people do ask and when I answer they say, "Really?" or roll their eyes like this is an inconvenience to them.

24. But I love it when people: Laugh when I make jokes about my condition, give me good, long hugs, and ask me for updates.

25. My favorite motto, scripture, quote that gets me through tough times is: "Beyond logic, beyond reason, beyond hope."

26. When someone is diagnosed I’d like to tell them: Educate yourself.  If you've been graced with an "orphan disease," sometimes in a medical situation you will be the only one in the room who knows anything beyond a quick definition about your condition.  You need to know the ins and outs of it.  Be your own advocate and if you can't, find someone you trust who will.

27. Something that has surprised me about living with an illness is: that all people have the same reaction to seeing me with my cane.  Double take at me, look at the cane, look down at my feet, then up at my face- usually with a disapproving look.  Yup, I get it.  My leg isn't in a cast so you think I use this thing to look cool.  Thanks.  It's just amazing the amount of people who follow this exact same order of motions.  Also how many people will walk into, jostle, kick, or block in a person in a wheelchair.  Dude.  WTH?

28. The nicest thing someone did for me when I wasn’t feeling well was: give me a long hug and remind me that I am loved and not alone.

29. I’m involved with Invisible Illness Week because: it affects me, my family, and many of my friends and so few people unaffected understand.

30. The fact that you read this list makes me feel: thankful that you care enough to have gotten this far.  If you have, please comment.  No one commmented on the last one, so I'm not even sure if anyone bothered to read it.  I know sometimes in the face of shit like this that people don't know what to say, but fuck that and just say anything.  Say, "Hi."  That'd work to.  Just let me know that this personal shit that I'm putting out there for the sake of "awareness" is not just going out in a vacuum.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com 

Saturday, September 11, 2010

Slowing down

I've noticed recently that it feels like my body is running out of steam.  Everything is taking me longer.  Everything I do is harder. 
(Sorry for the slight rant)

I drop half of what I pick up.  I can't sit down as long as before.  When I'm sitting down or lying in bed, I have to use my arms to shift myself.  It's not like I feel exhausted after performing a simple task like folding laundry--it's that somehow folding laundry has turned into running a military obstacle course while taking a calculus test.  It makes me feel like an ass.

People ask me what I did with my day.  It's a common question.  What did you do today?  I dread it.  I feel like I'm being scrutinized every time.   I tell them: I checked my email, changed the guinea pig cage, called a couple of doctors' offices to straighten out appointments/prescriptions, did dishes, and made dinner. 

And the response I get most of the time is along the lines of, "Is that all?" 

And here I am feeling like I have just survived being drawn and quartered.  Everything hurts.  And when you have chronic pain, sometimes I'm not sure people understand what it means when you say, I hurt.  You hurt all the time.  This isn't news, right?  No, this is very different.

Say everyone has a baseline of pain.  Healthy people?  Baseline of no pain.  People with chronic pain?  Baseline of X amount of pain.  All day, all the time.  Docs have told me that there isn't much to do about this--that chronic pain is chronic.  Get used it, pretty much.  And I do, enough to continue to have a positive look on life and manage as well as I do.  But I never get used to it enough that I can forget about it or that it goes away.  Or that other or new pain doesn't hurt.  So when I say, I hurt, I mean that the shit that is going on is way above my baseline level and is seriously fucking me up.  But of course, even though I feel this way, I still get the, "Well, what else did you?"

No.  You aren't listening.  I checked my email--given this is the easiest thing I did.  I changed the guinea pig's cage.  This took over an hour not including breaks.  Sure it didn't used to take that long, but that's when I had hands that worked and didn't drop 75% of the old bedding, piggie poop, and new bedding on the floor.  I talked to doctors' offices.  Have you ever dealt with big medical offices?  On hold, transferred, cut off, on hold, on hold, transferred.  No idea how long that took.  I did dishes--again, breaks in between each dish to lay down on the couch.  I made dinner which took over four hours.  It wasn't even like a fancy souffle or something.  I just work slower now.  I have to do a little, go lay down, and then come back to it.  By the end of that, all I could do was eat a little and go lie down for good. 

And when I say I took a break to lie down, please don't think it's like a refreshing 30 minute nap or that I plop down on the couch and go, ahhhh.  This is a lot more like fetal position, slow measured breathing, and a pull it together mantra.

I feel like I'm working my ass off.  It doesn't put me in the mood to get disappointed looks.  (Mind you, the people I interact with on a daily basis and really know me do not have this reaction.  They generally tell me I did too much.)

In short, I am frustrated.  Yes, I realize that most people can do in under two hours what I can do in a day.  Yes, I understand that most people can do these things while working full-time. Yes, I feel pathetic most times all on my own without needing you to point it out for me.  No, I am not being lazy.  I have three chronic, incurable conditions; remember those?  Yes, I'd love to be able to do more with my day.  D'uh.

Do I want someone else to do these things for me so I can just rest my joints?  Hell no!  I plan to work my flat ass as hard as I can work it until it drops.  I don't mean push it until I pass out.  I mean work at a reasonable pace so that by the end of the day I feel that A. I got something accomplished, and B. I feel tired and a little sore, like I worked.  Because ultimately that's what I want to do.  So, why you gotta give me attitude about it, world?

Wednesday, September 8, 2010

Speed Update.

Sort of like speed dating.  Here we go!

  • Went through all my antibiotics and still felt crappy.  Probably because I was overdoing it the whole time.  So I dedicated 2 days to doing jack-shit, drinking tons of water, and relaxing.  Fever broke, stomach pain stopped, infection gone.  Yippee!
  • I still can't pee like a normal person though.  It still takes a while to convince my bladder to part with its contents.  Neuro doc says it could be a result of my back problems getting worse.  Great.
  • Speaking of which! Saw the Neuro Bowtie Doc for results.  The EMG came back normal as he expected.  He's confident that I have an autoimmune disease and is throwing the ball back in the Rheumy's court. 
  • Talked to Dr. K who agreed I should cancel my appointment with the second Neuro instead of redoing all the tests and such.
  • Started Plaquenil so I had to have an eye exam with pupil dilation.  I goddamn hated it.  I have good vision and didn't handle it well when everything was suddenly blurry.  That adventure here. (My entry is fine, but most of the blog is not work friendly.  And probably offensive.  But funny.)
  • Hands have been having good and bad days.  When they are good, it's pretty damn cool.  When they are bad, they are bad.  
  • Left elbow doesn't want to straighten.  Weird.
  • Seeing Dr. K on the 20th.  Hoping to figure out which autoimmune disease I have within the next decade.  That'd be cool.  (And faster than it took the docs to figure out that I have EDS.)

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 99.9º.  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.

Friday, July 30, 2010

Holy Social Security, Batman!

I got a call today that I have been approved for state disability benefits.

I don't believe it.  I really don't.  I'm in shock.  I only applied in March and everyone told me expect to wait a year to hear their decision.  Expect to be denied the first time.  Everyone gets denied the first time.  Expect to have to appeal in court at least once.  Expect to wait around 2 years to finally win your claim.

But I got a call today saying that my claim had been approved and I figured, "Cool!  My claim has been approved to move on the next level.  Time to go see their scary Social Security doctors." 

And she asked if I had a few minutes and I said of course.  We went back over all the stuff I had told them to make sure nothing had changed.  Then she said I would start receiving a check for X amount on the first of the month.  And I thought, WAIT A SECOND.  WHAT THE HELL?

So I let her continue to talk and wish me a wonderful weekend and I did the same and I just sat there in silence for a second.  I brought my notebook over to M and pointed to the note that said, "Monthly check for $X" and then we both flipped the hell out in such a good way. 

I ended up calling Social Security right back because I had questions like, "Am I getting health insurance too?" (I am!) that I hadn't even thought to ask because I was so completely speechless.

I'm convinced this is some paperwork mistake that they will figure out and revoke once they see that I never underwent an eval from their doctors but maybe I'm just paranoid.

Really I'm just surprised and shocked and elated and so happy that I can start paying for my own groceries and things like that.  Things I haven't been able to do for almost two years now. 

I STILL don't have the words to express how this makes me feel.  I really needed this.  I had been feeling so overwhelmed and bogged down and ready to sink.
Thank you, Universe.

Thursday, July 29, 2010

For real now--this is kind of insane.

This was my day today.  And I'm not done.  (Mind you, I am also on prednisone and in full on mood swings that occasionally border on 'Roid Rage.  I'm really not in any shape for them to be doing this to me.)


Me to Dr. K:  The rehab doctor was a flop.  What should I do?

Dr. K: Make an appointment with a neurologist at Tufts, but you won't get in quick so if you can see a local neurologist sooner, do that.

Me:  Deal.


Me to Tufts Neuro:  Appointment with a neurologist, please.

Tufts Neuro: Why?

Me: [insert most concise explanation of my hand problem that I can manage]

Tufts Neuro:  September 20th.

Me:  Okay, great!  Thanks.


Me to New England Neuro:  Appointment with a neurologist, please.

NE Neuro: Who are you?

Me: Me.

NE Neuro:  Ah, you see Dr. C.  I'll transfer you.

Me:  No, wait!  I saw Dr. C for a completely different reason and he's not a neurologist.  My rheumotologist asked me to see a neurologist.

NE Neuro:  I'll transfer you to Dr. C's secretary.

Me:  :(


Dr. C's secretary:  How can I help you?

Me:  Uhhhhhh.  I need an appointment with a neurologist?

Dr. C's secretary: Why?

Me: [insert most concise explanation of my hand problem that I can manage]

Dr. C's secretary:  Who are you?

Me:  Me.

Dr. C's secretary:  Ah, you saw Dr C last year.

Me:  *headdesk*  Yes, but I don't want to see him now.  I've been asked to make an appointment with a neurologist and Dr C is a physiatrist.  So I'm not quite sure why I'm talking to you...

Dr. C's secretary:  Do you need occupational therapy?

Me:  No, I need to see a neurologist.

Dr. C's secretary: Then I don't know why you were transferred to me. 

Me:  Me either.

Dr. C's secretary:  I'll transfer you.

NE Neuro:  How can I help you?

Me:  Hi, I'm Me.  I need to make an appointment with a neurologist.  I know I've seen Dr. C before, but I don't need or want to see him now.  I need to see a neurologist.

NE Neuro:  Why?

Me: [insert most concise explanation of my hand problem that I can manage]

NE Neuro:  You're going to have to have your doctor's office call and make the appointment for you.

Me: Really?

NE Neuro:  Yes, just call and tell them that we need their office to set up the appointment with us.

Me:  Okay.


Me to Tufts:  Hi, Dr K asked me to make an appointment with a neurologist and I just talked to their office and they said they need your office to call and set up my appointment and I don't know why and I'm sorry to bother you.  The office is NE Neuro and I can give you their number.


Tufts:  Huh?


Me:  I know, but I tried to make an appointment but they told me to call you.


Tufts:  Tufts Neuro is located on the 12th floor and their number is 617-


Me:  No, I know that.  I'm not talking about Neurology at Tufts--I already have an appointment with them all set.  I'm trying to make an appointment with NE Neuro in [City].  I can give you their number.


Tufts:  Okay.  Well, I'll call upstairs to Neurology and call you back.


Me:  No, please don't.


Tufts:  *Click*


Tufts calling back:  Hi...I called Neurology and they said you already have an appointment there.


Me:  Yes, that's what I told you.  I'm talking about NE Neuro.

Tufts:  Oh.  I didn't understand.  Do you have their number?

Me:  [Number]

Tufts calling back:  Hi, they weren't sure why I was calling them but we set you up something with Dr. C because you had seen him before.

Me: Noooo!  Dr C isn't a neurologist! 


Tufts:  Oh.  huh?

Me:  He's a physiatrist! I need something with a neurologist!


Tufts:  Oh.  I'm confused.  I'll call them back.


Me:  GAH!!!!!!!

Me calling NE Neuro anyway:  Hi, I'm really sorry but I called earlier because I need to set up an appointment with a neurologist but they told me my doctor's office had to call and they did but they wanted to set up something with Dr C because I've seen him before but he's not a neurologist so please pretend I didn't see him because I don't want to see him again because I need to see a neurologist and I just wanted to let your office know that when my doctor's office calls again that what I need is to have an appointment made with a neurologist.

NE Neuro:  I can just set up an appointment for you.

Me:  Really??  Yes, please!

NE Neuro:  August 11th with Dr. V. 

Me:  ...Thank you.

Me:  *Shutting my phone off for a few hours*



My Voicemail:

Tufts:  Hi, I called NE Neuro again and set up an appointment with a doctor for Aug 3rd.  They seemed confused so please call me back to confirm this.


NE Neuro:  Hi, Tufts called and wanted to make an appointment, but you already had one set up so we didn't.  Please call us back to confirm.

Who's lying!?
...

I NEED A VACATION. 

Saturday, July 10, 2010

Results are in--and survey says...

They still don't know.  Saw Dr. K in Boston and the end result is that we are still dealing with "A big question mark."

Great.

The details.

We went back over my test results.

  • Bloodwork--all normal except for an elevated ANA.  only 1:320, still homogeneous.
  •  Xrays (Hands and chest)--normal.
  •  Barium swallow--my esophagus is working properly (yay!) though it looks like I have a hiatal hernia.
  • PFT--I have an abnormal amount of air left in my lungs after I exhale, but he said that something like that doesn't normally show up alone but in a group of a bunch of other abnormalities.--Bottom line, doc says that a spinal fusion like mine could result in abnormal lung volume.  (I don't get that, but whatever.)
    • Bone scan-- There was mild symmetric radiotracer uptake in my wrists and diffuse increased radiotracer uptake in my hands and fingers.  Dr. K described my hands/fingers as showing up patchy.  --Radiology said this would be consistent with early Reflex Sympathetic Dystrophy.

      I don't understand what the results of the bone scan really mean.   I know the first part means my wrists are slightly inflamed.  Got that. But the second part?  He mentioned something about the bone metabolizing faster than normal.   Why?  What does that mean for my bones?  What are they doing?  Are they growing?  Longer?  Wider?  Doesn't anybody else feel like this is a problem worth more than passing mention?

      Anyway.  The bone scan seems to be pushing us back towards the RSD and slightly away from Scleroderma.  But not definitively.  Dr. K said I could have RSD or very early stage Scleroderma or Undifferentiated Connective Tissue Disease.  OR I could have RSD and Scleroderma.  OR I could have RSD and Undifferentiated Connective Tissue Disease.  He is not willing to say anything for sure.

      Treatment?  Double my gabapentin and try a short round of steroids.  See a Rehab doctor (not 100% sure for what purpose).  Appointment for local rehab doc (Dr. K the 2nd) on the 26th.  See Dr. K in a month to likely repeat bloodwork for ANA.  He also wants me to see a Neurologist, but he didn't want to bombard me.

      It's the ANA that's giving him trouble.  They keep repeating it.  My first one was 1:1260.  WAY HIGH.  And that's what keeps Dr. K from ruling out autoimmune diseases as an issue since having an ANA of 1:320 isn't abnormal for some people to have just because.  No autoimmune disease, they've just got it for no reason.

      Needless to say, I was crushed by yet another We don't know.  Dr. K said that hopefully the condition will make itself known as it progresses, but let's let it get worse until we can easily see what it is is not my idea of a fun time.  After seeing Dr. K I was exhausted.  Tired.  Ready to just stop seeing doctors for a year or so.  Scooped out.  Like someone had taken a melon-baller and located all the places I store my Strength, Perseverance, and Dark Humor Coping Skills and scooped them out while leaving my Mope Drive, Tear Machine,  and Feeling Fucking Miserable Generator intact.  All I wanted to do was lay in bed and cry like a 13 year old who has just been dumped by her first kiss the week before the dance.

      I was a mess the first few days, but I'm back.  Though, I've come back with the sentiment that maybe I should stop having this "hope" thing when I go so doctors because it just hurts too damn much to be let down time after time.  Maybe I should start expecting to not get answers.  That seems to work for M.

      I saw my Primary Care, Dr. B, right before I saw Dr. K and I said that I was really hoping for some answers.  Dr. B even told me to not get my hopes up.  He said that Rheumatology as a study is not the same field of medicine it was 10 years ago.

      He said, "Ten years ago, they'd diagnosis you.  Today, the pervading new theory is that all Autoimmune diseases are really just one disease that presents differently.  So they don't diagnosis you.   Maybe it's Lupus and Scleroderma and something else all mixed together."

      So the new theory says they can't put their foot down and say what it is--but shit, that really leaves the patient in a bind, doesn't it?  Even if you extract the emotional roller coaster we are put on every time, legally that blows.  For those of us who can't work, try telling Social Security that you are disabled because of... the doctors aren't sure yet.  It could be a bunch of things.  Please help me anyway?

      I'm on the doubled dose of gabapentin.  Not a whole lot of difference.  My hands are a little better some days.  Some days they are swollen and useless.  My spinal stenosis is getting worse and I can't keep my shoulders in place for the life of me.  I start the steroids next week.  I'm hoping to enter into August as buff and pumped up as a Pro-Wrestler.

      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.)

      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. 

      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.

      Friday, June 11, 2010

      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. 

      Wednesday, June 9, 2010

      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.

      Saturday, June 5, 2010

      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.

      Sunday, May 30, 2010

      Dr. Strange Hand

      Good news!

      Since backing off to the 2X a day dose of the Gabapentin, I haven't had anymore twitching!  I have also noticed that the burning and stinging pain in my hands is much less, and they even tingle less than before.  The shards-of-glass joint pain is still ever present, however, and my skin is feeling very tight today.

      Bad news!

      This morning I looked down at the hand in my lap and jumped because I didn't know whose it was.  They just don't look like my hands anymore.  I don't like that.  I really liked how my hands looked before.  They were one of my favorite features.  Plus I gesticulate with my hands so much when I talk and now that I can't move them I feel like I'm moving my arms around with dead fish flopping at the ends of my wrists.  Not what I'm going for.

      Friday, May 28, 2010

      Now What!?!

      The hand is twitching now.  I'm on my second day of being on the full dose (3X a day) of Gabapentin.  I haven't had much relief of my nerve pain yet, but I just started the medicine so that doesn't surprise me.  It does make me feel loopy, dizzy, very talkative, and almost a little ADD.

      But just today if I relax my hand, let it go limp, the fingers on my right hand start twitching.  There is a tingling in my arm and fingers first and then they start moving.  But I'm not moving them!  I don't like it!  The thumb is the most active one.  I haven't yet seen my left hand do it.  And recently I've taken to letting my hands go limp at rest a lot since it hurts so much to move them, so there's a lot of twitching going on.

      I have no idea if this is just a new symptom or one of those bad side effects from the Gabapentin.  Being home alone with no one else to ask for advice, I called the pharmacy and asked him if finger twitching was a common or acceptable side effect for Gabapentin.  He told me to call my doctor right away and he'll probably want me taken off it.

      Okay, so I called and left a message.  Hopefully he'll get back to me before the weekend?  UGH.  *twitch twitch*

      EDIT:

      I got a call back from Dr. K.  He told me to back off the Gabapentin to twice a day, just in case I am having some atypical reaction to it.  He has never heard of this type of side effect since Gabapentin in a nerve suppressant and if anything would be given to stop twitches like these.  He did say that these twitches could be caused by RSD or Scleroderma. 

      If the twitching doesn't stop or gets worse at 2X a day, he wants me to stop all together and see if the twitching sticks around.

      I told him when my tests were scheduled for and he was not happy about the long wait.  He said he was going to try to do something about that--to get my tests moved up because he doesn't want me waiting that long.  I'm supposed to hear back by the end of next week if they have rescheduled my tests.

      He did give me the results to my xrays and bloodwork.  Everything was negative other than the ANA.  The ANA is still positive but not skyrocketing like the first time. I think he said it was the same as my second test.


      The good news about my test results.
      • Besides having an elevated ANA, my blood is totally honky dory.  I mean, they tested for a lot of stuff and the fact that only the ANA came up is pretty cool. 
      • The normal chest xray means that I don't have horrifically obvious sclerosis in my lungs.  Hooray!
      • The normal hand xray means that my finger is not broken and my bones are not deteriorating.  Hooray again!
      The bad news about my test results.
      • The bloodwork doesn't tell us anything new.  Although Dr. K did remind me that in order to have Scleroderma, you don't need to test positive for the Scl-70 antibody to have it.  You only need a positive ANA count which I do have.  I really wish he'd stop reminding me.
      • The bad thing about having a normal hand xray is that if I had RSD for as long as I have, my bones should show mottling on an xray, and they don't.  Dr. K says this sort of lowers the possibility of Reflex Sympathetic Dystrophy.  Which is good only in the light that I don't want to have RSD, but I would happily take RSD over Scleroderma.
      Time to wait some more.

      Tuesday, May 25, 2010

      We like the new doctor, just not his theory.

      We saw Dr. K in Boston yesterday.  He was really great.  His office was running behind (by like an hour) but the nurses were really accommodating and kept promising that he was worth the wait.  When he finally showed up, I think they were right.  He stayed with us for over an hour.  He wanted to hear my story first, then gave me a full exam, then we talked for a long time about what he thought.

      Here's what he thinks.
      • He can understand why Dr. G would think that I have Reflex Sympathetic Dystrophy, but he is not convinced that RSD would explain all of my symptoms.
      • Instead he brought Scleroderma back into the picture.  He is not convinced that he can rule out Scleroderma based on my symptoms. 
      • Gosh, I wish he would rule it out.
      • So we're down to RSD or Diffuse Scleroderma (possibly Sine Scleroderma?), OR BOTH.
      • He ordered a battery of tests which he apologized for and stated that he doesn't often/like to do this.  Dude, order whatever tests you want--just find out what's wrong with me!
      • After explaining that I have nothing that gives me any relief for my hands (unless I want to be passed out the pain pills I have for bad EDS pain) he prescribed me Gabapentin.  It's supposed to help with nerve pain.  I'm taking it for the first time tonight, and we'll see how I manage.  
      • He was going to give me some med for high blood pressure to help with my Raynaud's but since I'm having less trouble right now (what with the 90ºF weather and all) and the fact that my bp is already low enough that I get dizzy and my vision goes white when I stand up, he decided not to.
      • He wants me to be moving and stretching my hands as much as possible no matter if it's Sclero or RSD.  I'm not to push so far that I split my skin again, so pretty much keep doing what I'm doing.
      As far as testing, he is redoing all the bloodwork (again).  This will be my 3rd ANA/RA factor/sed rate run around in 6 months.  There are other things on there that I'm pretty sure I haven't been tested for yet as well.  Or at least there better be.  They took 9 vials out of me around 2pm after having eaten half a bagel plain at 8am and nothing else. And I didn't even pass out.  I am blessed with good veins.

      Funny story:  When the phlebotomist went to draw my blood he told me to, "Make a nice tight fist."
      I just started laughing and told him, "I can't!  That's why I'm here!"  Well, I thought it was funny.

      They're doing a urinalysis--and I must say I am a fucking champ for being able to pee in a cup with two bad hands.  I didn't think I was going to be able to do it.  They asked for the sample and of course I agreed.  It wasn't until I got into the bathroom and was struggling to get my hands to work well enough to get my pants down that I realized I was up Pee Creek without fingers.  I did it though, and I think I deserve a medal.

      I also got hand xrays and a chest xray.

      I have to go back (when they call me with the schedule) to get a pulmonary function test, a barium swallow, and a bone scan.  Dr. K also mentioned the possibility of a skin biopsy depending on how the other tests come back.

      Then I get to go back after all this is done to have another chat with Dr. K to hopefully receive good news and the promise of a cure by eating frosted oatmeal cookies.

       So I am back to waiting.  Again. 

      Oh, and when he waggled my joints, as all the docs do, Dr. K said that he had never seen anyone who had hip joints that moved like mine.  Oops!