The recovery process after a long hospitalization can be long, boring, and frankly difficult on so many levels.  Yes, I said after a long hospitalization.  I’m pleased to share I’ll have been home three weeks on Monday!  And while being home is an infinite improvement over being in the hospital, it raises new challenges, frustrations, and disappointments.

I’ve been very limited in what I’ve been able to do for myself due to pain and extreme fatigue and lack of endurance.  I have a long way to build back up, and I have to be patient.  But I don’t want to be patient right now.  Right now, just walking to the bathroom and back is enough to exhaust me.  But I fantasize about walking around my family’s Hanukkah party on Sunday.  If I am even up to going at all.  I didn’t make it to my family’s Thanksgiving.  Another big disappointment.

Being sick I’ve missed out on so many important events.  Holidays, birthdays, Bar and Bat Mitzvahs.  Laying in bed it’s sometimes hard not to feel like life is passing me by.    I’ve lost so much and given up so much.  A million tiny and not so tiny disappointments.  Too much to count or quantify. But each a pain that runs so deep it sometimes threatens to swallow me up.  But there’s also so many things I’ve gained.  I just hope that it balances out in the end.

“Too young.”

That is a phrase I have heard a lot in different contexts since I’ve been dealing with chronic illness.  I’ve been told I’m “too young to be this sick”, “too young to have to use a wheelchair”, and “too young to have to use a walker”.  Most recently I was told I’m “too young to increase my dose of pain meds” by my pain management specialist.

I went to my monthly pain management specialist appointment last week.  I’ve been having a lot more pain some days lately.  Stabbing pain in my joints that wake me from sleep and make me gasp in pain when I walk (but yes I’m still walking 99% of the time!).  I went to my appointment with the hope that I would get some relief.  But my doctor felt that I am “too young” to increase my pain meds.  I left feeling disappointed, a little angry, and still in pain.

On one hand I understand her concern.  If I have to keep increasing my pain meds now, what will I do in five, ten, or twenty years for my chronic pain?  What will I do if I end up in the hospital with an acute flare of Autoimmune Pancreatitis which is extremely painful and no pain meds will work anymore?

But on the other hand, I’m in pain now.  And despite what people what people might say, the unfortunate reality is that I’m not “too young” to be in this much pain.  And my age doesn’t make my pain any less painful or any less valid.  And my age especially doesn’t make my pain any less deserving of treatment.

Overall I’ve been happy with my pain specialist doctor.  I’m grateful that she is willing to prescribe me pain medication at all.  I went through several doctors before her who flat out refused to treat me because of my age.

The crux of the problem I think is that chronic pain is invisible.  No one can see my pain.  My pain specialist doctor certainly can’t.  Only I can feel it.  However, though my pain is invisible, I certainly am not.  And I cannot let my invisible pain (nor any of my other invisible illnesses) make me feel invisible.

So what do I do?

I need to speak up for myself and advocate for myself more.  I cannot let myself feel intimidated about telling my pain specialist that I disagree with her decisions.  If I shrink back and keep this to myself, I make myself invisible as my pain.

I also need to share my experience with the people in my life, so they can understand what I’m going through.  I’m not talking about whining about being in pain, but, in the appropriate settings, tell the people in my life what it feels like physically and emotionally to be in my shoes.  Part of that is this blog.  Sharing my journey on this blog helps me feel empowered and lets me make my invisible illness visible.

The bottom line is I am “too young” for just one thing… I am “too young” to let this beat me!

This week is Invisible Illness Awareness Week!  Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love.  Help spread the word!

Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

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.

Before the wheelchair and the Prednisone, I could hide my illness in plain sight.  This is me right after a hospitalization.

Before I was in a wheelchair and now a walker, my illness was pretty invisible.  Though there are many downsides to invisible illness, one thing I did appreciate was that it gave me a choice of how much I wanted to share if anything about my illness.  If I wanted, I could mostly hide my symptoms, and no one had to know.  But my wheelchair became a physical sign of my illness and suddenly everyone, everywhere I went, instantly knew something was wrong.  And the big question that lingered in the air was “WHAT?”

I have always been a very open person.  Though like everyone I want to be accepted, I really don’t fear rejection.  Or at least I’d rather be rejected up front by someone I just met than a close friend far down the line.  So my policy about my illness has always been to share as much as the person I’m talking to in curious to know.  And the interesting thing has been that this has brought many blessings in itself.  When I share about my illness honestly and openly, I generally find that people respond with genuine empathy.

Sharing so openly has also given me the opportunity to help many people.  There are so many people out there going through similar experiences to me themselves or have a loved one or friend who is going through something similar.  I find that when I follow my intuition and share I find I’m speaking to someone who can benefit from what I have to say.

People are usually dying to ask me why I’m in a wheelchair or using a walker, but are afraid of being rude.  So I’ll steer the conversation that direction and put them out of their misery.  In this fashion, I often find myself sharing about my various illnesses with people I just met.  Sometimes I share the story of my physical illness and sometimes I share my struggle with mental illness.

Sometimes sharing doesn’t go very well.  Though most people are supportive and understanding, there will always be the ones who are judgmental or want to tell me what to do.  Either way I never regret sharing about my illnesses.

I find it’s important though that when I talk about myself, my illnesses aren’t the only thing I share about.  I am not my illness, and if I can communicate one thing that sticks with the person I am talking to I hope it is that people like me with chronic illness are so much more than the sum of their diagnoses.  I am also a women with hopes and dreams, talents and aspirations, fears and weaknesses.  I am human just like everyone else.  I am a graphic designer and a game designer and a novelist and a blogger and a scrapbooker.

I hope I never lose my desire to share fully and genuinely, and that I never forget to share the most important thing of all – what makes me who I am.

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.

---

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

---

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.

---

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.

---

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.

---

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!