"...But You Don't Even Look Sick!"

I’m sure it comes as no surprise that I did not vibe with that new Rheumatologist last Friday.  I don’t even care to get into specifics because I will get annoyed all over again but there it was once again… the TRUTH.  NOBODY KNOWS HOW TO MANAGE OR CURE MY ILLNESS.  It completely intimidates anyone I sit down with the first time I go through my list of issues.  It’s not only tiring to tell my story from the beginning but it also makes me sad.  Rehashing it all is painful.

I’ve been pretty down since then.  I try not to dwell on these things but I can’t tip too far in the other direction either.  Either extreme doesn’t work out so well for me.  I just keep telling myself to live my truth, make my own life and drown out the docs and test results.

One thing is for sure, this month has brought one hard piece of information to digest after the other.  I am so ready for things to be smooth and groovy.  Maybe it will start today…

Pain pain pain

Slept two hours at most last night. Having a pain flare up, for what reason I do not know. Some days I cannot deal with the mental battle of trying to manage my pain with excercises, visualizations, etc.. It’s been a long time since I’ve done this but today I just couldn’t deal with these intense aches and pains on top of no sleep so I just took my heavy pain meds. I hate to cave but it was very necessary. I hope it works very soon.

I’m sitting here thinking WOW, this has been a long, tough week.  It all just hit me here on the couch. So many thoughts.

I feel like I couldn’t possibly process one more bit of information in my brain this week.  So much to digest.  So much to “sit with”.  I’m letting myself go over the edge — go to the “scary place”.  Maybe then I could release and relax my body and my mind.

I need a punching bag

Still waiting

My appointment was 50 minutes ago.

Another new doc

Sitting in the waiting room. I’m here to see a brand new Rheumatologist. A woman. I have never been totally happy with my care when it comes to my chronic problems. Not one of them has ever seemed to really grab a hold of my illness and actually be proactive about it. I want a doctor who thinks about my symptoms as a whole and I hear this woman does. Let’s hope. I’m psyching myself up here in this gray waiting room. It’s always hard telling my story from the beginning. Exhausting, really.

Bigger than my body

Spent the morning facing reality. It’s the thing I hate most about hospital visits.

I spend 100% of my days facing my brain in the direction of hopeful positive thinking.  I’m not gonna lie, it’s so very hard especially when things are happening in my body that scare me all the time.  I choose to do this because it’s the only way.  Because I HAVE TO.  Because I really truly believe I have a healthy body somewhere underneath all the scar tissue and difficulties.  I have to chisel it all away with love.

It’s especially hard on days like today when I am faced with my body’s limitations.  I watched the barium go down through the xray of my chest and fight it’s way down my esophagus.  I wasn’t surprised when the doctor told me it isn’t working.  In fact, there is no peristalsis happening.  My esophagus doesn’t contract and that’s why it hurts to swallow anything.  The Scleroderma attacks connective tissue.  I’ve been like this for quite a while now, and I knew all of this already.  So why is it so hard to hear it for real from the whitecoats?

I was shaking inside the room.  Partly from the sub-degree temperatures in the hospital but also because I was nervous and uncomfortable.  It blows my mind when I look at these tests… this physical evidence that my body is ravaged from the Scleroderma.  But I don’t feel as ravaged and broken as the tests say I am.  I refuse to feel it.  Can that make it not true?

My sister came with me today.  It felt good to have someone waiting for me outside of this room of truths, a nightmarish funhouse of weird machinery and whitecoats.  I left it all behind in there, put on a smile, and couldn’t wait to get outside and live my life, MY TRUTH with someone I love.  I won’t let any test result take that away from me.

What happens next I don’t know but I wish that I never have to feel this way again.  It doesn’t get easier with practice.

I will find that healthy whole me.  No matter how long it takes.  I don’t believe the doctors when they say there is no way to fix an esophagus that’s lost its motility —or no cure for Scleroderma — or no way to live with a scarred heart for very long.  That’s just not my style.

Waiting

While I am happy to say I have had a pretty good run the past several days I am not so great today.  I have a big day at Columbia tomorrow and I am always anxious the day before I head up to the hospital. I hate being up there in those buildings.  I am instantly transported to a “bad” place.

The thing is, I am feeling so great and then I am put in this position where I am a “patient” again.  “Sick” again.  My focus today and tomorrow is just being me, as I am now, and not letting this all get into my head.  I have to stay up and pretty much ignore what is going on.  Pretty hard when I have to drink some nasty stuff, get xrays, talk to doctors, etc…

One of the things I have going on that I haven’t mentioned here yet is a trouble swallowing.  It’s part of the Scleroderma… your esophagus loses its motility.  Stops working properly.  Often I cannot get food down without water and even then it hurts.  Sometimes swallowing water is a challenge!  We have to look closely to see what’s happening because I eventually need a “trans-esophageal echo cardiogram” of my heart to take a closer look at the leaky valve.  Of course, they can’t shove equipment down my throat until they do some tests to see what is going on down there that is preventing me from swallowing.  Annoying.

So, I prepare today.  Feeling a bit gloomy from the weather and I just want it all to be over already.