Freedom is something that is often taken for granted. Freedom comes in a lot of different varieties and all are often taken lightly until you don’t have that freedom anymore.  Until I got sick I took so many very personal freedoms for granted.  I especially took for granted the freedom to move around  where I want unassisted by a wheelchair and the freedom to drive to any place I wanted.

Now that I can’t walk and I can’t drive, those are things that are no longer taken for granted.  And now I am constantly searching for ways to increase my freedoms once more.

Soon I will be getting a specially designed wheelchair that will allow me to be up out of bed in it without being in pain like I am in my current wheelchair.  However, this new wheelchair can only be transported by a wheelchair accessible vehicle, something I cannot afford.

So today my sister Danielle started what we are calling my Freedom Drive – a fundraiser to help me buy a wheelchair accessible vehicle (as well as help with my other medical expenses).

Please consider donating, and, if that isn’t an option, please share this link with as many people as you can.  Please post it to Twitter, Facebook, and MySpace,  email it to your friends and family, or even blog about it!  Thank you so much for all your help and support!!!

http://www.giveforward.org/freedomdrive/

Join the Facebook Freedom Drive Fan Page!

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.

I don’t really know what to write.  I’ve been kind of a writing funk.  More precisely the stress of everything it getting to me.  I’m in trouble financially, my doctors aren’t currently doing anything to help me get better, and I’ve been doing a lot of “being there” for my friends and family which I am more than happy to do – it’s just that its emotionally draining.

It’s so important to stay stress free when you have any chronic illness but especially one that’s autoimmune related.  High levels of stress lead to flareups of my illness.

Once upon a time I was a cutter.  Since then I have found other ways to de-stress that don’t involve hurting myself.  Now I have a little chocolate therapy on occasion (or rather frequently), I watch a favorite movie (usually The Princess Bride when I’m not feeling well), I talk to a friend or my sister about what’s bothering me, I scrapbook, or I force myself to write in this blog.  I’m feeling a little better already.

What do you do to de-stress when the road gets too bumpy?

A page from my Peace Book.

I try to look on the bright side of things.  But when I was evaluated last week for my new permanent wheelchair last week, it brought up some unexpected feelings.

I’ve been feeling this odd sort of guilt.  Part of me feels like a failure and a quitter for finally working on getting a permanent and actually comfortable wheelchair.  I feel like it is symbolic of giving up on getting better even though I know that is not the case.  Rationally I know that my current wheelchair which was never meant to be a permanent solution is keeping me from getting the highest quality of life under the circumstances.  Right now I can’t be comfortable and in my wheelchair at the same time.  It doesn’t fit me well and causes me additional pain.  When I consider going to a movie on a rare occasion, I usually decline because I just can’t sit in my chair that long.

The new chair is going to be custom built to fit me.  It will allow me to be up and out of bed more of the day.  The whole chair tilts back to take the weight off my butt when I need it to and the feet also elevate which will help keep my ankles from throbbing.  It will have a custom pressure relieving cushion to sit on and the back rest will actually be tall enough to be useful.

All of this will help me become no longer bed-bound most of the time.  Which will be great. Yet some part of me still feels guilty.

The good news is that it comes in purple!  So that is what I am trying to focus on.  Not that I need a permanent chair, but the color.  It may sound silly, but it really does help.

The other issue is that I do not have wheelchair accessible transportation.  I won’t be able to take my new chair anywhere without it.  My current wheelchair is meant to travel — it comes apart into 3 lighter pieces that we can put in the car.  If I can’t take my new wheelchair out of the apartment, I’ll be just as stuck as I am now — in too much pain to get out and do anything.  And with SSI my only source of income, I cannot afford to even buy a used one.  So I am on a mission to find someone who will donate a wheelchair accessible vehicle using the power of social networking tools like Twitter, Facebook, and even this blog.

In case you are wondering, if money were no object, I would get a wheelchair accessible Honda Element.  But it would be a holiday season miracle if I could get any vehicle that can safely transport me to and from my doctors appointments that are about an hour away and anywhere else I needed to go more locally.  I will not be driving it, so I need the conversion to be for the passenger side.

I have approximately  3 months before I will be getting my new chair.  So consider this a call to action!  Please help me spread the word!  Please take a minute to post this to your Twitter or MySpace or Facebook or anything else you can think of!  The more people who see this the greater the chance one of them will have a vehicle for me.  Words simply cannot express how grateful I am for your help.

When you are sick all the time you often have to (sometimes unwilling) rely on the help and support of other people.  And that is something that should not be taken for granted.  So today, on the one year anniversary of this blog, I feel like I really have to thank all of you who have joined me in my journey as a novel patient.  During the ups and downs of this last year, your comments and support have been such a source of strength for me to draw upon.  And this blog has come a long long way since my first post.  Not only has its readership grown, but its pushed me to improve as a writer.  It’s even spawned the Novel Patient Community where every novel patient can have their own blog.

Though it has been a rough year in many ways, I am thankful for so many things.  I am thankful for a mom who not only lets me, her 26 year old daughter, live with her, but helps take care of me.  I am thankful for a dad who cares so much for me that he will always try and do what he thinks is best for me.  I am grateful for a caregiver who I also consider a close friend and a also for a best friend who I know will always be there for me when I need her.  I am thankful for a wonderfully supportive sister.  I am thankful for a cuddly dog that adores me.

I am also thankful for my doctors who have often gone out of their way to make sure I get the care I need.  I know I am a very complicated case to have to deal with.  This year I decided to make the five of my doctor’s I see the most handmade holiday cards to let them know how much I appreciate what they do for me.