I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in his strong embrace.  Instead he gives my heart a chase.  He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine.  I believe in studies and the scientific method.  He believes in testimonials and isolated case reports.  But that it is neither here nor there. In our differential beliefs we are at in impasse.  And no matter how I beg and plead I can’t get him to respect my wishes.

I even tried a different tact.  I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health.  But then, my dad went the very next day against my will and set up a consultation between an alternative medicine doctor out of state and my current internist.  This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken.  I am left unsure if I want him in my life at all right now.  As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway.  So much trust has been broken.  I just want him to hold me and tell me it it will all be okay.  Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous.  I can’t stop crying.  Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it.  And then there’s my dad making it worse.  Telling me the treatment I’m choosing for myself is going to kill me.  He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime…  I will get by without him.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.

I hoped for the best, but prepared for the worst, and unfortunately the worst won out this time.

I’m back in the hospital again.

I woke up Thursday morning feeling pretty horrible.  Fever, chills, dizziness, and worsening kidney pain.  After three days of oral antibiotics, my kidney infection was getting worse not better.  I called my doctor who agreed it was time to head to the hospital.

By the time I got the ER, fever, pain and dehydration had conspired to give me tachycardia (racing heart rate).  I suppose one of the upsides of being really sick is being seen right away.  Despite the crowded waiting room, they found me a bed in the ER straight from triage.

They ran some tests.  Not surprisingly my white blood cell count was way up due to infection.  The ER doctor quickly explained that though they send home 95% of patients with kidney infections, there were multiple reasons he felt I needed to be admitted.  I’m immunosupressed from all the Prednsione I’m on, I have multiple chronic illnesses, the oral antibiotics at home didn’t work, and so on.

So I was admitted.

I received two different IV antibiotics over the next several days.  My veins weren’t happy about it and I went through 6 IVs in as many days.  But overall my stay has been uneventful.  Mostly I’ve been too tired to do anything but sleep.

I had several visitors who helped break up the monotony.  My mom and dad spent the most time here with me.  Sunday I was pleasantly surprised by a visit from two friends from church, Liz and Halee.  Then yesterday an old friend from high school Jenny paid me a visit followed by Christy and Brad from church.

I’ve been waiting this morning to find out the results of my latest tests and was just told they are good to go.  I’ve been discharged!  Yay!

I will go home with oral antibiotics which I will stay on long term to hopefully prevent yet another one of these kidney infections I seem so prone to getting.  It’s getting old – ending up in the hospital every few months from these things.  I’m hoping that these long term antibiotics will do the trick and keep me out of the hospital.

Arise, walk through the land in the length of it and in the breadth of it; for I will give it unto thee.
Genesis 13:17

He answered them, He that made me whole, the same said unto me, Take up thy bed, and walk.
Then asked they him, What man is that which said unto thee, Take up thy bed, and walk?
And he that was healed wist not who it was: for Jesus had conveyed himself away, a multitude being in that place.
John 5:11-13 (King James Version)

Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less. It was a day that I thought would never happen on many levels. One thing that I thought would never happen was get Baptized, but Sunday was my Baptism. Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.

I’ve been hesitant to talk about my faith here as its a touchy and divisive subject for some, but I figure this is my blog and my faith has become a major part of my life. I share every other aspect of my life here. I would be remiss if I left something so close to my heart out.

But my faith wasn’t always so important to me. I was raised Reform Jewish, and though I was Bat Mitzvahed, Confirmed, and even assistant taught Religious School at my Temple, I never felt connected spiritually to that faith. So in my more recent adult years I’ve been searching for a faith that helped me feel close to God. For a while For a while I was going to the Universalist Unitarian Church in my area, and though I liked the people and the services very much I still didn’t feel that closeness to God that I so desperately needed.

So when Melissa invited me to join her for services at her at our local Church of Jesus Christ of Latter Day Saints, I thought it was a long shot but worth at least checking out.  I had already learned a lot about being Mormon from her during the time she’s worked for me, and she had suggested I could get a blessing for my health when I went to church with her.

I was totally unprepared for what I experienced; I felt God for the first time in a very tangible way.  I knew right in that moment that my search had come to an end.  That I had found what I had been searching for.  I decided to start investigating the church and taking my Missionary Discussions that I would need in order to covert.  My blessing also said that through faith I could be healed.  It has been amazing how true that has been.

Over the following week I started feeling better than I had in a long time.  I decided to capitalize on the opportunity and try walking again for the first time in over a year.  I started with just a few steps.  I expected for the recovery process to be slow going.  I expected that it would take months to build up enough strength to walk more than a few steps at a time after over a year of being in a wheelchair or bed full time.  But I have been praying every night and the improvements to my walking have been exponential!  And in just three short weeks, I went from my first steps to ditching my wheelchair completely!

So Sunday I was Baptized, and I walked the whole day – including down the steps into the Baptismal Font and up again.  My Dad and his girlfriend Wendy were there which made my very happy.  My Mom chose not to attend which was the only sad thing.  It was one of the very best days of my life! And with it I have found such peace and happiness the likes of which I had never known.  Words cannot describe how grateful I am.  It has been such a relief and such a comfort.  I truly believe that through faith in Christ I have begun the healing process!  And I am so thankful to Him for this and for the closeness I now feel to God.  Through Him I have found what I was looking for and more than I could have ever imagined.

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.