You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking.

I started scrapbooking almost two years ago now. My mom had made me a beautiful scrapbook for my Bat Mitzvah when I was 13. She promised my younger sister Danielle the same thing. But life got in the way and my sister’s Bat Mitzvah scrapbook turned into a middle school graduation scrapbook then a high school graduation scrapbook and finally a college graduation scrapbook.

As Danielle’s college graduation approached my mom still hadn’t started the scrapbook. But I figured maybe I could help. After all, I was home all day with nothing to do. It might even be fun, I figured. I had no idea I would end up loving it so much, that I would find a hidden talent, and a passion… well more like an obsession.

When all was said and done, my sister’s college graduation scrapbook became a three volume set encompassing her entire life up until that point. It was time to move on to other things, so I started in on my own life.

While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

The actual time I spend scrapbooking is therapeutic. It exercises my creative muscles and helps me relax for a few hours while I design and arrange, cut and glue, label and decorate.

It’s actually rather therapeutic to scrapbook memories of my illness. Once it is scrapbooked, it feel more concretely in the past. And it can help me look to the future. For instance, I did a page of my me taking my first few steps when I first started walking again. Now I am able to walk around a store! I can look back and remember it and see how far I’ve come!

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.

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!

Part of dealing being chronically ill is learning to smile through the hard times.  But right now though I’m having a hard time doing even that.

On Monday night, when I went to take my DailyMugShot, I wasn’t satisfied with my first, second, or even third attempts at my picture.  My smile was crooked in all of them.  Finally I realized that no amount of retakes would correct the problem.  I couldn’t make my face smile evenly on the left side.  In fact, the whole left side of my face was drooping slightly and my pupils were unevenly dilated.

I tried not to panic.  I looked back at my older daily pictures and noticed that this had been going on all week and getting worse with each picture.

A visit to my neurologist confirmed my suspicions that as I’d been trying to taper my dose of Prednisone my brain inflammation was returning.  So now I’m back up on an even higher dose of Prednisone to try and get it back under control.

In the meantime, I’m trying to continue to smile through the hard times.  Even if my smile is a crooked one.

For about 3 months I’ve been on a diet to try and loose the 150 pounds I’ve put on from the Prednisone.  I decided to do Take Shape For Life/Medifast because it seemed like a very safe diet as it is often doctor prescribed for weightloss.  Also my mom had done it and quickly loss the amount of weight she wanted to loose, and, when I had tasted the prepackaged food that makes up most of the diet, I really actually (and much to my suprise) liked it.

I didn’t really expect it to work at all with the Prednisone working against me.  But it really has!  Last time I was weighed (about a month ago in the hospital) I had lost about 20 pounds!  And as of today I am down 2 inches off my chest, 3 inches off my waist, 3 inches off my thighs, and 1 off my upper arms.

I haven’t been perfect (in full disclosure, I’ve been pretty bad this week with the Jewish holidays), but overall I’ve been very good.  It really helps that the bars taste like candy.

It’s not easy trying to loose weight when you are struggling with a chronic illness and constant pain.  Food can be a big comfort during such stressful times.  Especially when you have 25mg of Prednisone a day making you ravenous.  And it was so easy to blame the weight gain on the Prednisone and not take responsibility for it.  But deep down I felt really guilty about my weight.  Since I’ve started this diet, a lot of the guilt has gone away because I know I really am doing the best I can to loose the weight and keep from gaining more from the meds.  I still feel unhealthy though.  I also feel really unattractive and unlikable by the opposite sex at this weight.  I finally got motivated to try to loose some of the weight.  And though it won’t be easy… but when were things worth doing ever easy… I plan to eventually get back down to my 110 pounds self.

The other day I saw this site called Daily Mugshot and decided it would be the perfect way to track my weight-loss visually overtime.  So far I’ve only taken two pictures, but I’ll add a new one everyday.  Should be interesting to watch what happens!