Scrapaganza

June122011

When I look back on the most rewarding experiences of my life, they are almost all to do with serving others.  Right now I’m working on a community service project called Scrapaganza.  Scrapaganza is a scrapbooking event at the Ronald McDonald House in Los Angeles that celebrates the beauty of every life as a source of inspiration.

Ronald McDonald House provides housing for families who have seriously ill and injured children in the hospital.  These parents and siblings are dealing with very difficult circumstances.  Scrapaganza will be a source of joy during this stressful time in their lives.

The event will be open to all families currently staying at Ronald McDonald House.  After an inspiring keynote, each family will create a beautiful scrapbook telling their personal story and celebrating joyous memories.  Expert scrapbookers will be on hand to lend support and assistance.

Scrapaganza is currently seeking volunteers and donations.  Find out how you can get involved!

Please help me spread the word by posting http://scrapaganza.org to your Facebook, Twitter, and etc!  Thanks so much for your support!

 

Dreaming of Sleep

February252011

Childhood DreamsI’ve gone through periods of being a truly epic sleeper, but lately I’ve been having trouble getting a good night’s sleep.  Insomnia is a funny thing.  I have trouble getting myself to want to go to bed in the first place.  Then I wake every few hours once I do go to sleep.  All in all I’m only getting four to five hours a night most nights.  It’s gotten to be rather frustrating not to mention exhausting.  And it’s not good for my various chronic illnesses to get so little sleep.

Part of it is stress, my OCD and anxiety, fear of nightmares, and  some of my medications which are know to cause insomnia as a side effect (I’m looking at you Prednisone).  But part of it is also that I think I’m afraid of missing out on stuff I could or feel I should be doing.  As a result I have a hard time even wanting to try to initiate sleep.  I don’t know what to do about it.  None of the usual insomnia tricks work when you are avoiding sleep in the first place.

I’m frustrated with myself I guess.  I know I’m only sabotaging myself, but I can’t figure out how to stop.  Sigh.

Thinking of all this reminds me of a poem I once wrote one night several years ago when I just couldn’t sleep.  I’ll leave you with it and try to get some shut eye myself.

Night Game
By Lauren Soffer

When my thoughts go onto paper
And they can finally leave my head
With my worries just a vapor
I can finally go to bed

Tucked snugly amongst the covers
My eyes welcome in the dark
Yet consciousness still hovers
And Sleep canʼt make her mark

So Sleep and Thought begin
As the night slips into day
A game that Sleep will win
For she must have her way

With a loverʼs sweet caresses
Sleep slowly works her charm
Untying all Thoughtʼs messes
So he can do himself no harm

With Sleep holding on so tightly
To Thought closely at her side
The peace that I crave nightly
Is finally serving as my guide

Sleeping Sheep Family

Happy February 14th!

February142011

Happy Singles Awareness Day (♥♥♥♥♥♥ Mixtape Playlist ♥♥♥♥♥♥)

Single Awareness Day (also known as Valentine’s Day) is upon us!  Relationships (or the lack there of) are on the mind.  Relationships are hard.  Romantic relationships are harder.  Even for healthy people.  Having a chronic illness makes it that much more complicated.  It’s hard not to feel undesirable… broken.  I know the “right guy” will love me anyway.  I know the “right guy” won’t care that I’m 150 pounds overweight from being on Prednisone.  I know the “right guy” won’t mind carting my wheelchair or walker around on dates.  I know the “right guy” will love me for the walking pharmacy, allergy ridden, health disaster that I am.  And I have faith that the “right guy” is out there somewhere.  But until then I’ve written this song in honor of today…

Other Girls
by Lauren Soffer

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

No one to hold my hand
No matching footprints in the sand
No dinners in candlelight
No little love notes to write
Never get roses never get pearls
Love songs are for other girls

No chocolate candy hearts
No Romeo to play the part
No one to give me a good night kiss
No one to love and cherish hold and miss
Never get roses never get pearls
Love songs are for other girls

But don’t you get me wrong
Trade anything to sing a different song

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

Never get roses never get pearls
Love songs are for other girls

The Grieving Process of Chronic Illness

January182011

Your heart may stand in the sun...Sometimes I forget that learning to live with a chronic illness is an endless grieving process.  I tend to get very caught up in maintaining a positive attitude, and fail to let myself feel the negative feelings that naturally come with all the change and loss I’ve experienced while dealing with a chronic illness.

This past year has been a difficult one for me.  There have been lots of changes and losses.  I endured two long hospitalizations – one for six weeks and one for eight weeks with one week intubated in the ICU.  I’ve been through multiple changes in caregivers.  I’ve been dealing with my parent’s separation and impending divorce.  I even made a major positive life change when I converted from being Jewish to the Church of Jesus Christ of Latter Day Saints,  and though this has brought me so much happiness, it has wrought some negative side effects – significantly straining some relationships with family and friends.

Through all this I think I’ve maintained a remarkably positive attitude.  I’ve become an expert at coping.  I’ve channeled my energy into other things I still can do like scrapbooking, Alternate Reality Game design, web and graphic design, and novel writing.  This has helped me keep my spirits up as I’ve created an identity for myself beyond being a “sick girl”.

This is all well and good.  In fact it’s great!  I love being happy.  I have no desire to wallow in self pity.  But that doesn’t mean that the negative feelings go away.  But where do they go?

I’ve come to realize recently that I’ve been stuffing them away.  I still feel deep sadness, mourning, and loss.  I still have intense fear for my immediate safety and my future.  But I keep that all hidden deep beneath my ever positive outlook.  Why?  Because feeling them hurts and I’m afraid of what they’ll do to me and my relationships if I let myself feel them.

Still they come out in other ways.  I eat too much and don’t sleep enough.  My obsessive compulsive disorder flares up.

So I recently came to the conclusion that I needed a safe place to let myself feel all these negative emotions once and a while.  I decided it was time to see a psychologist – one that specializes in disability and chronic health problems.

I’ve only had one session so far, but that one session made me realize just how much I’ve bottled it all up and just how much I need to let it all out.  Because living with a chronic illness is an endless grieving process, and sometimes it’s important to let myself feel the full impact of that.

Recovery Blues

December32010

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.

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