Check out this video of me WALKING!  It has truly been a miraculous recovery process!

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.

When I was getting ready for my first Rituxan infusion I was so scared and didn’t know what to expect.  So for my second infusion I decided to use my new Flipcam to record the process for all of you!  I hope that it will give you a fair idea of what it was like for me.

WARNING:  This video contains footage of real medical procedures as well as some mild adult language and topics.  You’ve been warned!

In related news, my friend Marti has been encouraging me to visualize the Rituxan working in my body.  I figure it can’t hurt, so today I used The Hero Machine to make a visualization of Rituxan as my own personal superhero!  She’s all ready to kick some B-Cell butt!

It will still be at least a month until I might start to see some results from the Rituxan, but in the meantime I will dream of my Rituxan Hero zapping my B-Cells into oblivion.

When I was 19, I made a film about my OCD as it related to my problem with cutting.  At the time I made the film I really wanted to show what it was like to live with obsessive compulsive disorder that made me think about cutting myself 24 hours a day, 7 days a week.  I lived like that for 3 years.  Medication and an accidental seizure eventually brought that nightmare to an end.   And although it was probably the most horrible time of my life to date, it really made me a stronger person and prepared me to face dealing with my chronic illnesses.

But though it’s made me stronger, it also makes living with chronic illness a lot harder.  I tend to obsess about my symptoms if I let myself.  When I don’t feel well and I don’t know why, my anxiety can spiral out of control.  When I have a new scary symptom, it’s hard not to want to run right to the ER.  I never actually do that of course, but I obsessively think about it.

And then since doctors know about my mental illness, they often don’t understand me as a patient.  Sadly, for too long, doctors attributed the majority of my symptoms to my mental illness which delayed correct diagnosis for years.  Doctors seem slower to take me seriously even now than if I didn’t have a history of mental illness.  All patients of chronic illness seem to get told at least once that their problems are all in their head.  When the doctor knows that their patient has OCD they seem ever more ready to write symptoms off as anxiety or depression.  Sometimes, it makes it hard not to doubt myself.

Thankfully, my neurologist has told me that it’s actually the other way around.  He believes much of my mental illness if due to inflammation in my brain from my autoimmune diseases.  Obviously that isn’t good news, but it does help assure me that I know my body and that I’m not imagining things.  My symptoms and my mental illness are both very real.

The only effective “cure” for this problem I have found is to educate.  The more my doctors understand how my OCD manifests itself the more they accept that it is not causing my symptoms – just makes it much harder to live with them.  I also share with other people about my OCD, so they can have a better understanding what it’s like to live with.  And sometimes people open up to me in return.

So now I will share my film I made with you.

WARNING: It depicts cutting in a VERY graphic way, so this film is not for the squeamish.