Not So Silent Night

It really sucks that no matter what a little brat the little man is, "Santa doesn't bring presents to boys who don't behave!" is such an obviously empty threat.  He totally doesn't buy it.  Maybe it's because we don't really build up the whole Santa-myth.  Maybe it's because he's three.  He seems to think being three explains everything - Why did you kick the cat? Because I'm three. - perhaps he's right and next year Santa will have some power over his behavior.  Perhaps next year he will just magically be over this I'm-going-to-argue-with-everything-you-say attitude.  He's driving his father and me nuts.  The level of disagreeability just keeps going up.  Last night he screamed "NO!" for a good ten minutes because he wanted to write in the condensation on a window of my dad's house; the problem being that the condensation was on the inside of the glass.  Such matters of physical reality do not matter to this child however; he just wanted to write on the damn window.  Grrr...

Either way he's still getting presents on Christmas because neither of us is enough of a hard ass to revoke a whole day.  

Thankfully, our Christmas family-juggling is finally worked out.  We have the little man all day tomorrow; we're spending the first half of the day with BF's mom, the second half with my mom, her BF, and my brother, then taking him to his mom's so that he can wake up there Christmas morning.  And while he's opening presents at his mom's, we'll be at my dad & A.'s opening presents with my brother and my step-siblings and then - and I am so proud of this part - I actually worked a two hour nap into the schedule before BF and I head over to his mom's for dinner.  Then we get a couple days to relax before we go to Disney on Ice next Saturday (a very generous gift from BF's friend/boss and his girlfriend) and then we'll be getting together with Dad & A. (and the kids) to do dinner early next week and have them do presents with the little man.  So hopefully things will go smoothly; I'm going to try my hardest to keep my anxiety under control (utilizing my Ativan Rx as necessary) and to not let anything get to me.  If BF and I both get stressed and snappy things get rather unpleasant, but if one of us can keep it under control we can usually talk the other off the ledge.

Oh and two great big Christmas presents for me from the universe; one very dear friend will be coming home for good after a two year tour of duty in Iraq and another will be coming home from Austin.  I miss them both a whole lot and I can't wait to see them again.  

I hope all of you are getting to enjoy the holidays with your friends and family, whether they be Christian, Jewish, or otherwise affiliated (or unaffiliated, as I am).  I'll be checking in again before New Years with something less current events...you know, all of that looking forward, looking back stuff.  I think we all get a little reflective this time of the year and this has been quite a year to reflect on.  And gasp I've actually been keeping up with this blog for more than a year now so I even get to reflect on my reflections...Sounds like a lot of work now that I put it in writing.

Merry Christmas, Happy Hanukkah, or have a good Thursday - choose your flavor!

Some days...

Some days I just can't manage to keep it together.

Some days I feel like I'm drowning.  Trying my hardest to fight back an onslaught on tears that wouldn't accomplish anything.  

I'm alone.  No one gets it.  There's no one who can hold me and tell me that everything's going to be okay because it won't.  The words would be about as effective as my tears.  

I want answers.  I want my life back.  I want my friends back.  I don't know how to go on living like this.  

I crave some sense of purpose with every ounce of my being.  I can't stand the feelings of uselessness, of nothingness.  

And it just keeps running through my head that it's unfair.  Really fucking unfair.  That I never got a chance to be who I was becoming before this...this thing...took over, derailing my life.  Derailing Me.  I don't know who this new person is.  I don't know what she's supposed to do with her life or what her reason for being is.

I know how pointless it is to rage against the intangibly unfair.  I know that it doesn't do one damned bit of good.  I just don't know what I could be doing differently.

I can't exist to sit on the couch, watch tv, re-read the same books...

I need more.  I need a reason to wake up.  I feel like I'm desperately clinging to the few threads of my life that remain.  I'm scrambling in a desperate attempt to keep it together.  

I can't live like this.

Shaken to My Foundations

Saw a new rheumatologist yesterday.  It was the most time I've spent in one room with a doctor...ever.  She's starting from scratch and refusing to make a diagnosis based on past lab tests.  I like her already.

She's re-running all of the markers for SLE, scleroderma, and polymyositis.  She also referred me to a dermatologist for a vasculitis evaluation and having me get a high-resolution chest CT.  All of this is totally awesome...and scary.  It's almost as strange a feeling to have so many of your past assumptions shaken as to be diagnosed in the first place.  And I feel like I know so very little all of the sudden, as a result I'm putting myself through the curse of the e-medicine age - self diagnosis.  Going from the suggestion of vasculitis being the culprit I began comparing the symptoms of the different forms of vasculitis to the symptoms that I have.  The major problem being that I have so many symptoms that have all evolved over the last seven years.

As a "House, M.D." addict, I've heard him chastise his team of doctors numerous times for suggesting multiple diagnoses for people with diverging sets of symptoms.  Somehow I never thought to apply this to my own symptoms.  I have at least three separate diagnoses and additional symptoms that don't match any of them.  So when this new doctor suggested that from what she was seeing she couldn't diagnose me with any of my prior diagnoses, it took me a little while to wrap my head around it, but it soon made sense.  Why would the diagnoses I'd been given be unable to explain so many of my symptoms?  Wouldn't it make more sense for there to be a single unifying illness causing all of them?  Does it even make any statistical sense for me to have fibromyalgia, SLE, scleroderma, PAH and still have a handful of unexplained symptoms?  It doesn't seem right to me.  Such a small percentage of people get each of these diseases individually, for me to get all four consecutively, within the same short span of years seems like it would take some pretty incredibly bad luck.

 

So I started searching, finding plenty of diseases that don't cover all of my symptoms, but cover many.  Mixed connective tissue disease seems to be the most likely diagnosis that could come out of this, but it was the indications of vasculitis that the doctor had seem that intrigued me, specifically Wegener's Granulomatosis.  This has been the one disease that I've found for which I fit all of the symptomatic criteria, with the exception of kidney and eye involvement, without discounting all but my GI symptoms, which could just be a result of years of over medication.  It would explain my PAH, joint pain, muscle weakness, incessant fatigue, and even the ongoing bout sinusitis that has lasted for the whole of this last year.  So we'll see.  I don't want to jump to any conclusions without some tests to back them up, but hopefully by next month I'll know a bit more and maybe even start a treatment that will help something.