Tonight I wheelchair danced.

But that’s not where this story starts.

Once upon a time, I was afraid of dancing.  In fact, for most of my life I was afraid of dancing.  I never was super coordinated and I certainly lacked natural rhythm.  I was convinced I couldn’t dance and that I looked stupid trying.

Later, when I was old enough to have a few drinks first, I could get up the courage to dance a bit.  And when over a year ago now I ended up in a wheelchair, dancing seemed to be out of the cards forever.

But the world works in mysterious ways.  And someone named Jane McGonigal came into my life and with her eventually came her invention Top Secret Dance Off.  She and her games have changed my life for the better in innumerable ways and she has truly been a blessing to me, so when I heard about Top Secret Dance Off or TSDO I knew I had to be a part of it.

However, the way you participated in TSDO was by donning a disguise and submitting your video of you dancing to one of the dance challenges.  But I was in a wheelchair.  I could barely dance before.  How could I now?  But I am not so easily dissuaded from something I am determined to do.  So timid at first I made my first and then second video featuring Finger Dancing!

But then I began to joke to my fellow TSDO players that I would wow them with a wheelchair ballet.  Their response to the idea was so positive that I decided that it was something I had to do.  So I recruited my best friend and caregiver at the time Sarina (a real former ballerina) to help me.  The result wasn’t something either of us expected and the response to the video blew me away.  People laughed and cried and were moved and inspired.

For my wheelchair ballet video I won a mask.  The only condition of accepting the new mask as a reward was I had to make a video of me putting on the mask for the first time and dance whatever dance came out using a dance move known as “the solar eclipse” which I was told started in the elbows.  To this day I’m not sure what happened to me when I put on the mask, but my fear of dancing was conquered!  See for yourself…

So tonight I am unmasking myself to all of you because tonight while out to dinner and dancing with my dad and his girl friend I wheelchair danced without any mask at all and I didn’t have to think twice about it.  And although I didn’t see it myself, my dad said when I powered on my wheelchair to spin around on the dance floor, the people behind me watching applauded and cheered.

It occurs to me that the world is full of little miracles and hidden blessings like this.  Because without a wheelchair and Jane and TSDO I may have never challenged myself to get over my fear of dancing at all.

My dad and I REALLY don’t see eye to eye when it comes to my choices of treatment.  He has a very hard time accepting that as a 25 year old woman they are in fact my choices and not his.  My dad is a staunch believer in some pretty radical (and some not so radical) alternative medicine treatments.  He believes that all my doctors are wrong because they are from a western medicine perspective.  He doesn’t even believe in my diagnosis.  So he sees my choice to follow conventional treatments in effect killing myself.  His words not mine.

This makes it VERY difficult to have a relationship with him since right now my health is such a big part of my life.  And he won’t agree to disagree.  I feel at such a loss at what to do.  I don’t want to cut him out of my life, but I don’t need his constant negativity about my choices.  I’m the one who is sick.  I shouldn’t have to take care of him and his anxieties as well.  But that’s basically been my role in my family my entire life.

As much as I wish my dad will change, I don’t believe he ever will.  I don’t know what that will mean for our relationship going forward, but it makes me sad that my illness is driving another wedge between a person I love and myself.  It happened with so many friends who just didn’t want to or couldn’t or didn’t know how to deal with someone their age being chronically ill.

People have such strong and personal reactions to someone else’s chronic illness that I think they easily forget what that person is going through.  My dad is afraid of some horrible side effect occurring from a medication I’m on, but he never acknowledges MY fears.  He tells me how he is sooo worried about me every day, but what am I supposed to DO with that?  Does he really expect me to be the one to comfort HIM?!

Just because I put on a brave face and do very best to be optimistic and make a life for myself despite my illness doesn’t mean I don’t have needs too.  It doesn’t make the intense lonliness and isolation or the fears for my future or the daily physical pain of my illness any less.

Buy my dad doesn’t see it this way.  So he continues to drive the wedge in deeper.  And it hurts.

Literally.

I bit my lip so hard I tasted blood, but felt no pain.  Most of the skin on my face, my lips, my tongue are more or less numb.  The strange thing, I realize now, is that it’s been happening so gradually I hadn’t noticed until tonight.  Or maybe I didn’t want to notice.

I just went down on my dose of Prednisone.  Must have made the numbness severe enough for me to finally take notice of what wasn’t there.  Because this has happened before.  When I was last in the hospital the left side of my face was numb for over a month.  Prednisone finally made it go away.  Swelling in my brainstem my doctors suspect.

And now the Prednisone is being tapered and the numbness is back.  If only it would numb the pain from my arthritis or Autoimmune Pancreatitis.  Then maybe I could be on less pain medication.  Or numb the anxiety I feel about this returning symptom or my unknown prognosis.

But alas I am merely tactiley numb.  And that knowledge hurts so much I want to cry.

Tomorrow I’ll have to call my neurologist and rheumatologist and determine what to do.  I am waiting for my insurance to approve a new IV infusion treatment.  It’s been a month of waiting for that so far.  Hopefully I can just start that and avoid more Prednisone.  But if I have to go back on high doses of Prednisone in the meantime, I suppose I’ll just learn to deal.  I always learn to deal.

The most important thing through all of this is that I do not become numb.  That I don’t loose my spirit in the face of this illness.  But I have no fear that will ever happen.  I do not know if I believe that everything happens for a reason, but I do believe that I can make a reason out of everything that happens.  I have faith in my ability to do that.  And that is enough for me.

So the medication that was supposed to be helping me was actually hurting my liver.  It also wasn’t doing anything significant to help calm down my autoimmune.  I felt ready to move on to the next line of treatment, but what would my Rheumatologist say?  Would he agree?  Would he disagree?  Would he do the unthinkable and want to just WAIT?!

I had a bad case of “the pre-appointment jitters” over the weekend.  Fear of the unknown comes into play a lot in chronic illness.  I have no clue what my prognosis is.  I don’t know what I’ll be up to doing tomorrow let alone next month.  I don’t know what new symptom will strike next.  But all of this I have learned to accept as part of my illness and part of my life.  But I haven’t gotten over a deep seeded fear that my doctors will leave me high and dry and alone in this struggle.

Its not irrational.  I was left high a dry by all of my doctors (not my current ones) for about 6 years while my disease got worse.  Now I finally have the best team of doctors a novel patient like me could ask for.  But still, when those appointments I book months in advance finally roll around I get those jitters.

Monday, the day of my appointment, didn’t start out well.  The weather seems to know when I have to trek to the city for one of these appointments and conspires to make sure that its one of the rare rainy days we get in sunny Southern California.  My wheelchair had to be disassembled and stuffed into the car during a downpour.  But despite the rain and inevitable traffic, we made it to my appointment early.

And my jitters came to naught.  My doctor agreed that it was time to move on to the next line of treatment.  He had me stop the old medication that was causing my liver problems.  Soon I will be starting IV infusions of the new medication twice a month.  And I have high hopes that it will work.  (Though I have some jitters about that as well.)

The weather seemed to agree that thinks were looking up.  As we drove to my after-appointment reward, seeing Coraline in 3D, I saw another rare sight in SoCal – a rainbow.