Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.

Before I got sick I was a super independent person.  I always preferred to do things on my own and avoided asking for help even when I really needed it.  With the onset of my autoimmune diseases, especially the neurological symptoms and symptoms that limited my mobility, asking for help became an unavoidable way of life.

Now I need help with even basic things like getting dressed or washing my hair – things I have done on my own for most of my life.  Those were the hardest things to ask for and accept help with at first.  It was frustrating for me and it was frustrating for my mom who initially found herself as my only caregiver.  Suddenly she was caring for me in a way she hadn’t needed to since I was a small child.  It tested our relationship.

At the time I felt very hurt at her frustration.  I wondered why she didn’t just automatically understand how much I had to humble myself to even ask for help in the first place.  It hurt when she responded with questions about whether I really needed the help or if I was feeling as badly as I was saying.  We fought a lot at a time when I really just needed her support.  Eventually I came to understand that I was failing to communicate.  I was also blinded by my own experience.  I was so caught up in dealing with the implications of a chronic illness and how it had shaken my world that I failed to see how profoundly it was affecting her as well.

But when I started to communicate this to her – that I knew how hard this was for her too  and that I appreciated all she was giving up to take care of me and that I knew it was also hard to watch her daughter get sick – the fighting tapered off.  I also found new ways to help her in return  that I could still do – mostly various types of computer and technical help.

When my mom simply couldn’t do it alone anymore, my need for help blessed me with two beautiful friendships in the form of two wonderful caregivers.  Sarina, my first caregiver, is more than a friend to me.  Born exactly one year apart, we say we are twins separated by a year at birth.  But it was odd at first having someone – a stranger – my age helping me with the very personal things I needed help with especially since I had been abandoned by several of my closest friends over the prior year.  They simply didn’t want deal with my new found illness and subsequent dependency.  Some stopped being my friend because they didn’t even believe I was actually sick and some of them just found it too much to handle and some I will never know their reasons.  In any case it hurt.  A lot.  But Sarina came in and loved me and accepted me and my illness.  She was truly a blessing and still is.

After Sarina moved away to further her career and get married, Melissa, my current caregiver, came into my life.  She is an angel in my life.  She, like Sarina, is always there for me.  We laugh a lot.  And through both of them I found that though I was sick I could still be a good friend in return.  I could still listen and be there for people.  I didn’t just need help from them, I could give it in return.

But at the end of the day I am still dependent on other people.  And I still hate that.  I don’t think I’ll ever not hate watching my mom or Melissa assemble my back backbreakingly heavy wheelchair.  I hate that I can’t just do it myself.  Though in a lot of ways, my relationships have grown and been strengthened by my need for help, and for that I am grateful, I am still eager to find ways to lessen my dependency.

So I am VERY pleased to announce that I’ve taken a step in the right direction – nine of them.  Last week  I walked (with the help of my walker) nine steps.  It was the first time I’ve walked in over a year!  I was having a low pain day and just went for it.  It was incredibly painful but even more incredibly worth it!

This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it HERE.

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 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.

On Friday I turned 26 years old!  And I really had something to celebrate!  The night before I got a call from my doctor letting me know that the lab tests were a mistake and I don’t have a blood disorder!  I was so relieved I almost cried.  So on Friday I was able to celebrate my birthday worry free!

Even being able to celebrate my birthday not in the hospital is something I’m grateful for as I spent my 24th birthday in the hospital and my 25th birthday recovering from just getting out of the hospital.

So this year I celebrated by giving myself a much needed pampering.  My mom and Melissa (my caregiver) joined me in getting our hair cut and colored.  I dyed my hair red with brighter red and golden highlights.  Then we went out for a birthday lunch at one of my favorite restaurants in the mall.  Afterward we went to Bare Essentials and got our make up done.  Then we went shopping for a while and Melissa bought me my birthday present – a new pair a jeans that actually are small enough to fit (another thing to celebrate – weight loss).  Finally we got all dressed up and went out for a nice birthday dinner!

When living with a chronic illness it can seem like its one bad thing after another.  So it’s especially nice to have something to celebrate for a change!

Sometimes in the face of adversity you just have to stand tall.

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.