Fear.

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:

• Genko commented on Shattered Trust Hi Lauren: Sorry this has been an additional stress for you. I think it must be almost impossible fo
• NovelPatient commented on Shattered Trust I think you misunderstood what I meant. I'm not opposed to alternative treatment all together (
• Suzanne commented on Shattered Trust Lauren, I hope you will give your dad a chance. I’m sure he feels helpless watching you go through s
• Alison commented on Shattered Trust Hey Lauren. I’ve still been thinking about you because it reminds me so much of all I’ve been throug
• Gillian commented on Shattered Trust Hi Lauren. As a mother & a daughter I can kind of see both sides. Watching your child suffer ill

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© 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

Wouldn’t it be amazing if, during our darkest hour, we could reach under our bed and open up a box of hope?  A “box of hope” could be a figurative thing that we reach inside ourselves or out to God to find.  But sometimes you need something more.  Sometimes you need a literal box of hope.  And that is just what I created for myself during my darkest hour.

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.

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Going through pictures and old magazines I decorated the inside of the box with things I wanted to do with my life, places I wanted to travel, people who cared about me, things that filled me with hope.  I hadn’t yet found out if I had gotten into USC Film School (a few months later I did), so I put a picture of a director’s chair with “USC Alumni” written on it.  I glued in some of the very shells that had led me to make the box to remind me of how beautiful life could be.

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

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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.

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I placed my childhood comfort animals – my blanky, kitty, and lamby – inside.  Though nubby and threadbare from a lifetime of being loved the went into the box to remind me to always feel safe.

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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!

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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.

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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.

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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.

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I looked at my box of hope every day for about a year. It got me through a lot of very dark hours and days and months. Then there came a time when I could carry my box of hope around with me in my heart, and I didn’t need to look at it so often.

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!

Recent Comments:

• Annie commented on Hospital Update I hope the feeding tube goes well – you are in my thoughts times 110! Annie
• Gillian commented on Hospital Update Thinking of you. You’re in my prayers and I hope that the procedure went really well this time.
• Wacky Lisa commented on Hospital Update I really hope tomorrow goes well & that the NJ tube helps a great deal.
• Alison commented on Fear and Liver Failure writing it all down makes me feel better too. I agree with maureen, fear is difficult but you seem t
• Robby commented on Fear and Liver Failure I’m thinking of you constantly Belle… It is so hard to say have no fear…but you and I both have

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© Novel Patient for Novel Patient, 2010. | Permalink | 9 comments | Add to del.icio.us
Post tags: art, art therapy, Bar and Bat Mitzvah, bat mitzvah, best friend, blog, Body weight, bombardment, box, Candle, collage, comfort, creativity, crossroads, cutting, darkest hour, depression, desk, film, film school, fresh in my mind, God, health, health an, help, hope, hospital, intensity, intrusive thoughts, life, mask, mental health, Mental Illness, mind, miracle, mom, obsessive compulsive disorder, Obsessive–compulsive disorder, OCD, Outdoor Education, parents, patient, picture, razor blades, road, second time, self control, self harm, self help, senior year, share, sister, suicidal, suicide, therapist, therapy, tiny shells, tropical theme, understanding, usc

Appearances can be deceiving with a chronic illness.  Looking at a person you usually can’t even begin to see what they are going through.  Sometimes even your doctor can’t see what’s right in front of them.  Sometimes you have to spell it out for them.  Especially when you have a lot of symptoms and medical problems, I’ve found it extremely helpful to bring your doctor a printed list summarizing your medical history and list of symptoms broken down by category.

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:

• alan m rogers commented on Walk By Faith Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro
• Jen Fryer commented on Walk By Faith What wonderful news. I cannot tell you how happy I am for you.
• Alison commented on Walk By Faith I know it can be hard to talk about your faith in this kind of forum, but I’m glad you did! The best
• Annette commented on Walking: The Power of Positivity and Prayer I heard about the insanely slow taper from someone else, and she had the most success of anyone in a
• stephanie commented on Walking: The Power of Positivity and Prayer That is wonderful! Keep up the great work. Stephanie

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© 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

Today is the first day of National Invisible Chronic Illness Awareness Week, and it has me thinking about thinking about both the visible and invisible aspects of my illnesses.   Nearly a year ago now my invisible illnesses became a lot more visible.  The pain from my arthritis became so severe I could no longer walk or even stand.  I was forced to use a wheelchair for my mobility.

Before the wheelchair (and the walker that came before it), my illness was completely invisible.  At the time I found it completely frustrating that no one could see that I was sick.  People assumed that what they couldn’t see couldn’t possibly be serious.  Sometimes people assumed that what they couldn’t see wasn’t even real.  Now I wish I could ditch the wheelchair and still pass myself off as “normal” when I wanted to.  I feel like now my first impression always inevitably includes my wheelchair.

But despite this very visible symbol of my illnesses, I feel more invisible than ever.  It is very hard to go out in a wheelchair, and I am usually too tired and in too much pain to do so.  As a result, I am mostly home-bound.  I am literally invisible to the people in my life I used to see in person.  Out of sight.  Out of mind.

But though I am invisible to most people in the physical world, I am very visible in the virtual world.  Through this blog my illness is not invisible at all.  It is there for people to see plain as day.  Through this blog the invisible becomes visible.  Here I can let you see the things that most people can’t.

Here the joint pain, the numbness in my left side of my body, the severe dryness, the low grade fevers, the debilitating fatigue, the pain when I swallow, the nausea, the stomach pain, the rib pain, the muscle weakness, the tremors, the migraines, the involuntary muscle moments, the memory and concentration problems, the seizures, the sleep apnea, and the obsessive compulsive disorder all become visible.

Here too, the emotional toll is no longer invisible.  The worry, the loneliness, the anxiety for my future, the grief for how things once were, and the sadness for the friends I’ve lost along the way all become visible.

And I especially hope that lessons I’ve learned, the inner strength I’ve found, the faith in myself, and hope for the future are not invisible here either.

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National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

A virtual conference in held at www.invisibleillnessweek.com and the blog is updated a few times a day during August and September.

Bloggers are welcome to participate anytime, but are encouraged to unite efforts during August and September to increase awareness online and share their experiences as well as encouragement. A badge is available that says you are blogging during the actual awareness week.

Start a blog on Novel Patient Community today and blog about your chronic illness in support of the awareness week!

Recent Comments:

• enaxor commented on Celebrate! So glad you had good news and what sounds like a wonderful day for your birthday.
• Kim Alcala commented on Celebrate! It sounds like you had a great day!
• labfly commented on Celebrate! Yay Belle! Happy happy Birthday!
• Katgirl commented on Celebrate! Fantastic News! Happy, Happy Birthday!
• Marti commented on Celebrate! Yay!

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© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: anxiety, arthritis, blogging, Chronic, Chronic Illness, concentration, concentration problems, emotional toll, experiences, faith, fever, first impression, illness, illnesses, impression, invisible chronic illness, invisible illness week, invisible illnesses, involuntary muscle, joint pain, life, mind, moment, muscle weakness, Numb, numbness, obsessive compulsive disorder, pain, patient, patient community, rib pain, seizures, sleep apnea, stomach pain, tremor, tremors, virtual conference, virtual world, wheelchair

When I was 19, I made a film about my OCD as it related to my problem with cutting.  At the time I made the film I really wanted to show what it was like to live with obsessive compulsive disorder that made me think about cutting myself 24 hours a day, 7 days a week.  I lived like that for 3 years.  Medication and an accidental seizure eventually brought that nightmare to an end.   And although it was probably the most horrible time of my life to date, it really made me a stronger person and prepared me to face dealing with my chronic illnesses.

But though it’s made me stronger, it also makes living with chronic illness a lot harder.  I tend to obsess about my symptoms if I let myself.  When I don’t feel well and I don’t know why, my anxiety can spiral out of control.  When I have a new scary symptom, it’s hard not to want to run right to the ER.  I never actually do that of course, but I obsessively think about it.

And then since doctors know about my mental illness, they often don’t understand me as a patient.  Sadly, for too long, doctors attributed the majority of my symptoms to my mental illness which delayed correct diagnosis for years.  Doctors seem slower to take me seriously even now than if I didn’t have a history of mental illness.  All patients of chronic illness seem to get told at least once that their problems are all in their head.  When the doctor knows that their patient has OCD they seem ever more ready to write symptoms off as anxiety or depression.  Sometimes, it makes it hard not to doubt myself.

Thankfully, my neurologist has told me that it’s actually the other way around.  He believes much of my mental illness if due to inflammation in my brain from my autoimmune diseases.  Obviously that isn’t good news, but it does help assure me that I know my body and that I’m not imagining things.  My symptoms and my mental illness are both very real.

The only effective “cure” for this problem I have found is to educate.  The more my doctors understand how my OCD manifests itself the more they accept that it is not causing my symptoms – just makes it much harder to live with them.  I also share with other people about my OCD, so they can have a better understanding what it’s like to live with.  And sometimes people open up to me in return.

So now I will share my film I made with you.

WARNING: It depicts cutting in a VERY graphic way, so this film is not for the squeamish.

Recent Comments:

• shannon commented on Hospital Perspective hey you strong woman you! We all need to pray that a bad ass advocate gets in there and gets the thi
• Tresbien commented on Hospital Perspective I am thankful for the honesty of your sharing and your determination to keep a positive attitude as
• Amanda commented on Hospital Perspective I’m here for you girl. You are always there for me…don’t know what I would do without you sometime
• Katgirl commented on Hospital Perspective Good Luck! Thinking of you.
• BarbaraRyan commented on In the hospital… I hope your discharged in the 3 days as promised! Take care and get some rest (or at least try to).

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© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: Chronic Illness, cutting, depression, film, living with chronic illness, movie, obsessive compulsive disorder, OCD, video