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 

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.)