Fear that I will end up back in the hospital.

Fear and OCD are a bad combination.  It’s bad enough to have a fearful thought in your head, but with Obsessive Compulsive Disorder you just can’t forget it.

I was woken by pain on Monday morning at 6am.  I felt like I was being stabbed in my left lower back and side.  An all too familiar pain.  The pain of a kidney infection.  AGAIN.  I’ve had far too many kidney infections the last few years.  Several of them have resulted in extended hospitalizations of a month or longer.  So to feel this familiar pain filled me with dread.

That is how the fear started.

I called my doctor as soon as the office opened.  He opted to put me right on antibiotics over the phone.  The first day was truly miserable.  I was in so much pain and my breakthrough pain meds were barely taking the edge off.  Yesterday I seemed to be feeling a tiny bit better.  But today I spiked a fever.

Not good.

Now the fear was escalating.  This infection was not heading in the right direction.  Instead it was following the well worn path that leads to the hospital.

I called my doctor who had me go get a urinalysis done to see where the infection is at.  I’ll get the result tomorrow.  The culture won’t be back though for a few days.

Now I wait and try not to let the fear take over.  But my thoughts are wanting to spiral out of control.

Kidney infection leads to hospital.

Hospital leads to latex exposure.

Latex exposure leads to anaphalaxsis.

Anaphalaxsis leads to another stay in the ICU.

Not fun.

Not fun at all.

Mental illness can sure make it more difficult to deal with a chronic illness.  But I’m trying to calm my thoughts.  Trying to channel my OCD into other happier obsessions.  But really I just want to cry because, though I try, sometimes I just can’t put a happy spin on life with a chronic illness.  Sometimes it’s not inspiring or uplifting.  Sometimes there’s no bigger picture.  Sometimes there’s no underlying lesson to be learned.  Sometimes it just sucks.

Sometimes I’m not a novel patient.  Sometimes I’m just a scared girl who doesn’t want to end up back in the hospital for the umpteenth time.

Recent Comments:

• Dana Marton commented on Progress! Congratulations, you are one of my picks for the Versatile Blogger Award! Go to my blog post to see
• Diana Lee commented on Progress! I'm grateful to hear you're doing so well. You truly look wonderful.
• cattie commented on Progress! Aww, so happy for you, Lauren, and thanking God you're well. I hope you have tons of fun, an
• Ariana commented on Progress! Yay! So sad I won't be going to ARGfest I love the picture with you standing! Your skirt is
• David F. commented on Progress! Beautiful to see your amazing progress! Congratulations! Have fun a ARGFest… Wish I could be there

© Novel Patient for Novel Patient, 2010. | Permalink | 3 comments | Add to del.icio.us
Post tags: 6am, antibiotics, art, Better, blog, breakthrough pain, Chronic, Chronic Illness, doctor, doctor who, dread, Fear, fever, flickr, heading in the right direction, health, hospital, hospitalization, Hospitalizations, illness, infection, Intensive-care unit, Kidney, kidney infection, kidney infections, latex, latex exposure, life, meds, Mental disorder, Mental Illness, monday morning, novel, obsessions, obsessive compulsive disorder, Obsessive–compulsive disorder, OCD, pain, pain meds, patient, picture, poison, ssi, tiny bit, title, urinalysis, worn path

I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.

Recent Comments:

• Dana Marton commented on Progress! Congratulations, you are one of my picks for the Versatile Blogger Award! Go to my blog post to see
• Diana Lee commented on Progress! I'm grateful to hear you're doing so well. You truly look wonderful.
• cattie commented on Progress! Aww, so happy for you, Lauren, and thanking God you're well. I hope you have tons of fun, an
• Ariana commented on Progress! Yay! So sad I won't be going to ARGfest I love the picture with you standing! Your skirt is
• David F. commented on Progress! Beautiful to see your amazing progress! Congratulations! Have fun a ARGFest… Wish I could be there

© Novel Patient for Novel Patient, 2010. | Permalink | 4 comments | Add to del.icio.us
Post tags: Appointment, appointments, art, blog, childhood traumas, Chronic, Chronic Illness, confidence, cure, daily struggle, depression, diagnosis, difficult times, doctor, Doctors, Faith, family, God, hope, hospital, hospitalization, Hospitalizations, illness, inner strength, inspiration, intrusive thoughts, Jesus, Jesus Christ, journey, keeping faith, Latter Day Saints, LDS, life, Mormon, novel, pain, patient, positive attitude, religion, self control, share, ssi, story, treatment, waiting, wheelchair, word faith

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.

Recent Comments:

• Dana Marton commented on Progress! Congratulations, you are one of my picks for the Versatile Blogger Award! Go to my blog post to see
• Diana Lee commented on Progress! I'm grateful to hear you're doing so well. You truly look wonderful.
• cattie commented on Progress! Aww, so happy for you, Lauren, and thanking God you're well. I hope you have tons of fun, an
• Ariana commented on Progress! Yay! So sad I won't be going to ARGfest I love the picture with you standing! Your skirt is
• David F. commented on Progress! Beautiful to see your amazing progress! Congratulations! Have fun a ARGFest… Wish I could be there

© Novel Patient for Novel Patient, 2010. | Permalink | 6 comments | Add to del.icio.us
Post tags: art, ballerina, ballet, best friend, blessing, caregiver, challenges, courage, dad, Dance, dance move, dinner, disguise, drinks, Fear, games, Jane, jane mcgonigal, life, mask, mysterious ways, natural rhythm, response, Sarina, ssi, story, top secret dance off, TSDO, video, wheelchair

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.

Recent Comments:

• Dana Marton commented on Progress! Congratulations, you are one of my picks for the Versatile Blogger Award! Go to my blog post to see
• Diana Lee commented on Progress! I'm grateful to hear you're doing so well. You truly look wonderful.
• cattie commented on Progress! Aww, so happy for you, Lauren, and thanking God you're well. I hope you have tons of fun, an
• Ariana commented on Progress! Yay! So sad I won't be going to ARGfest I love the picture with you standing! Your skirt is
• David F. commented on Progress! Beautiful to see your amazing progress! Congratulations! Have fun a ARGFest… Wish I could be there

© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: accessible transportation, circumstances, failure, guilt, life, News, pain, permanent solution, ssi, wheelchair