Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today.  It was just what the doctor ordered.

In the midst of confusion, I often turn to poetry to help capture my thoughts.  I wrote this one in about ten minutes, and I rather like it.  An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
Always
A place for Him

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics.  Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose.  Hehe.  So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.

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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.

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When I was a very young girl a fear of guns ruled my life.  I was afraid of being shot wherever I went.  I never wanted to leave the house for fear of being gunned down.  I was especially afraid of going to McDonald’s because I had overheard on the news that a little girl was shot and killed at one.  But even as a 5 year old, I knew that my fear was irrational, and kept it a secret.  I eventually conquered my fear years later when I was forced to participate in riflery at sleep-away camp.  Afterward, I vowed I’d never let a fear rule my life again.

But fear still creeps up now and again.  And it has certainly crept up today.

Today my doctor told me that he is concerned that if we don’t stop and reverse whatever is wrong with my liver, I will end up in liver failure.  My declining liver function may be a result of either Autoimmune Pancreatitis or Autoimmune Hepatitis or both or something else entirely.

I am, frankly, terrified.  But I refuse to let my fear rule me.  As a child I was so embarrassed of my fear that I suffered in secret silence.  But today I reached out and told all my friends the news and let them be there for me.  They more than rose to the occasion, and I am so grateful for them.  And now I am blogging it out.  Sometimes it makes it feel so much better to get it all written down.

I may still be afraid, but it doesn’t control me.  I can use coping mechanisms like these to control it instead.

Image by Jody Art via Flickr

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It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.

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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.

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When I was 16 years old, during my senior year of high school, I was immersed in a deep and serious clinic depression.  My Obsessive Compulsive Disorder had just been diagnosed but was not yet under control.  I had constant intrusive thoughts of hurting myself – of ending my life.

Looking back I really had amazing self control on the whole.  But I could only handle so much.  The second time I caved in to the constant bombardment of intrusive images of self-harm, and I ended up cutting myself using razor blades my parents had forgotten to hide out in the garage.

Afterward I was on the phone with my therapist at the time.  She was telling me I was at a crossroads… that if I chose to continue down this path of cutting I would probably end up in a hospital.  I wasn’t really listening to what she was saying.  Instead, I was transfixed by what was sitting on the desk in front of me – the candlelighting piece my mom had made for my younger sister’s Bat Mitzvah.  She had glued this tiny shells all over the outside of it go with my sister’s tropical theme.  And it struck me then with incredible intensity how very beautiful those tiny shells were – how simply amazing it was that something SO tiny could be SO beautiful.  And if something that tiny in life could be that beautiful… well all of life was beautiful and precious as well.

I rushed to get off the phone with my therapist.  I knew that I had to find a way to hang onto this feeling.  I had stumbled upon my internal box of hope!  But I knew that it wouldn’t be easy to tap into again.  I had to find a way to make it physical while it was fresh in my mind.  I had to find a way to remind myself of this epiphany every day because I knew there would be many dark days ahead where I would desperately need to draw on my box of hope.

So I had my mom (who is good at crafty things) help me cover an old shoe box with some bright pretty wrapping paper.  I wanted my box of hope to be private and inconspicuous on the outside.  I didn’t tell her what it was for, but perhaps sensing my urgency she kindly helped me anyway.  Then I took the box upstairs to my room and set to work.

I put a picture of myself as a child to remind myself of happy memories of my childhood innocence.  I was obsessed with The X-Files and desperately wanted to know how it would all end, so I put a picture of that as well.

Most importantly I wrote in large purple letters:

I CHOOSE TO CONTINUE LIVING

I WILL GET THROUGH THIS

Then it was time to fill the box.  Inside I placed a smiling drama mask to remind me of my love of theater and the creative arts since creativity had always sustained me during dark times and given me something to look forward to.

Next went the rug I wove myself while learning about Native Americans in elementary school.  I had always hated looking at it when I was younger because I hadn’t done it perfectly like my best friend Jennifer.  But over time I came to love it for it’s imperfections.  In the box, it reminded me that imperfection could be beautiful too!

I put in a bracelet I made when I was 11.  All the beads were pretty by themselves but together well… it reminds me that you can have too much of a good thing.  But also to have fun and to have a sense of humor in all things.

Second to last I put in a rope I tediously made myself during Outdoor Education in 5th grade.  I spent over an hour with my hands going numb in an icy cold river laboriously pounding all the moisture out of a reed before braiding it into a rope.  It reminds me of the power of hard work.  And the rope itself, which could hold my whole body weight, reminds me to always be strong.

Finally I included a letter that saved my life one day.  I was home alone after school and feeling very suicidal.  I was searching for a knife to cut myself with.  Suddenly, I had a prompting to go check the mail before I got any further.  I almost never received any mail, but on that very day the following letter was there for me.

I cried when I read the letter.  It quite possibly saved my life that day.  I stopped looking for a knife and starting trying to figure out who could have sent it.  I didn’t think about hurting myself at all for the rest of that day.  The letter reminds me that I am loved even when I don’t realize it or it doesn’t feel that way, and that God is there working miracles in my life.

Now it mostly sits in my closet, but I always know it is there if I need it.  But today I was talking with a friend who is going through a very dark time in her life, and I told her about it.  I offered to send her photos of it, but, I thought, why not go a step farther and share it here?  Perhaps there is someone else who needed a little box of hope today.

Has anyone else made a box of hope or something similar?  Please share and post about it in the comments!

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Since my Baptism three weeks ago, I’ve only used my wheelchair twice – once to attend an all day Transmedia Conference at USC and once to go to the Santa Barbara Zoo for the day with the Singles Ward at Church.  Though I’ve been doing fabulously with increasing my stamina for walking, I’m still a long ways away from being able to walk around all day at a hilly zoo.  The conference and the zoo were both a blast, but it amazed me that I already feel so weird being back in my wheelchair for short periods.  It’s hard greeting people’s belly buttons again when I’ve finally been able to look people in the eye for the first time in over a year.  I also feel more visibly disabled than when I’m just using my walker.

And I’m worried I’m headed back to my wheelchair.  The more I walk the more my joints have been hurting me.  But I’ve been pushing through the pain anyway which probably hasn’t been the best idea because I have now given myself an overuse injury in my left knee.  Now I need to get a knee braces and I’m considering getting ankle braces to prevent further injury.  I’m also supposed to start physical therapy.

So though I’ve been doing great at increasing the distance I can walk, it has come at a cost.  So that is one part of the equation.

The other part of the equation is the question of how I’ve been able to reach this point.  I believe it is largely a miracle.  A gift from God that has allowed me to recover my strength so quickly.  But my doctors feel (and I agree) that it is also that the Rituxan that I did all those months ago has finally shown some benefit.  So the question becomes would another round of Rituxan would get me even farther?  And is that worth the risk?

Those Rituxan infusions were no walk in the park.  I had problems with low oxygen during the infusions themselves followed by weeks of needing to be on extra Prednisone to counter an adverse reaction involving horrible back pain, fevers, and a rash.  And that was relatively minor compared to the other risks involved which could rarely include life threatening complications and infections.  But if the Rituxan helped reduce my joint pain this far, how much more could I be helped by further infusions?  That is a question I will discuss with my Rheumatologist at my next appointment.

In the meantime, I’m left to ponder if this is as pain free as I can get without further risk, can I live with that?  Am I better enough?  But even as I write this, I think I know the answer.

No.

I want my life back.  I want to live without pain every moment of every day.  I want to be able to go hiking and play tennis again.  I want to be able to make plans and not worry about how much energy I’ll have.  I want to be able to accept jobs and not worry about ending up in the hospital in the middle of them.  I want to be able to go back to school and not wonder if I’ll stay healthy enough to make it through the semester.

So NO I don’t want to be better enough.  I want to be better!  And I’m willing to risk a lot to get there.

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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.

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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

This serves another purpose as well.  When you have an unexpected and most unwelcome flare of autoimmune pancreatitis pain, you can distract yourself by making it into art while you wait for your pain meds to kick in!

Head over to Wordle to try it out for yourself (and feel free to link me in the comments).

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: Allergies, anxiety, Appendectomy, art, autoimmmune, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Cholecystectomy, Chronic, Chronic Illness, concentration, Costochondritis, depression, distraction, Erythomyalgia, Fatigue, fever, fibromyalgia, flare, Hashimoto, hospitalization, Hospitalizations, Hospitalized, iga deficiency, illness, intolerance, involuntary muscle, kidney infection, medical history, medical problems, meds, memory problems, muscle weakness, numbness, obsessive compulsive disorder, Osteopenia, pain, pancreatitis, pupils, seizures, severe pain, sjogren, sleep, sleep apnea, stomach pain, symptom, symptom list, tag cloud, tremor, wheelchair, word cloud