About

I keep asking myself how this all happened, because I still can’t believe it.

I’m Holly.

We don’t know when it started exactly, but my life seems to have started on this course in 2004.  That’s when the pain started.  I have a mystery illness that involves growths and scarring in and around my lungs.  The search for answers began in early 2005 and now seems to have come to a standstill.  I spent a week at Mayo Clinic in Rochester, Minnesota and was told that not only did they not have an answer but that it was unlikely that I’d ever find one.  Doctors at Rush University Medical Center in Chicago, Illinois, Mercy Medical Center in Cedar Rapids, Iowa and Advocate Good Shepard Hospital in Barrington, Illinois said the same.  In the end I signed over my records for research purposes in the hopes of someday finding an answer.  But I will forever have pain in my lungs.

I have severe alpha wave intrusion.  Unmedicated I was waking 10-15 times a night that I would remember.  I was told they don’t know of any way to help me.

I have Fibromyalgia.

But I have done my very best to keep going.  I discussed disability with my primary care doctor and was told there was no reason for it, despite being put through more and more tests.  After being prescribed a medication that caused me to gain 180lbs I was finally taken off work by a specialist in order to sort out my health.  Unfortunately he then neglected to take care of my paperwork and my disability claim was denied.  I was forced to go back to work and was promptly laid off.

I applied for many jobs, but the economy was tanking.  With all my medical expenses and the cost of COBRA I quickly went through my savings and had to depend on my credit.  I started making and selling jewelry.  I took classes toward my certificate in medical imaging paid for by my 87 year old grandfather.  I worked part-time as it was the only work I could find and received part-time unemployment.  I kept looking for full-time work.  How was I to know that working would harm me in the end?  I thought by being responsible I was doing everything right.  I was wrong.

In the Fall of 2009 the government recalculated my benefit based on my recent earnings.  Obviously working part-time for $9/hour didn’t even begin to match up to my corporate job, and thus my benefit was suspended for earning more than $146/week.  I could make more working a full-time minimum wage job, which we still all know isn’t enough to live on.  I barely get through the day as it is.  I’m so tired and in so much pain I can’t do much else but work.  Things are a disaster.

I applied for an Illinois Link card, but it turns out I make too much money to receive benefits.  If it were not for my 87 year old grandfather, my parents, and my friends helping me out I would have never gotten this far. I can’t pay all my bills.  In fact, if it weren’t for the help of those previously mentioned I wouldn’t be able to afford food, or my medications.  And my medical expenses keep racking up.  I can’t even afford bankruptcy.  I now have a doctor that is working to stabilize my health rather than trying to be the one to find the cause. We’re doing what we can to keep me from having to apply for SSDI. It’s not looking that great.

Through it all, through all the hardship I still find myself thinking that if it had to happen to anyone, I’d rather it was me.  I would never want anyone else to go through this.  I could never wish this on anyone.  If this had to happen to someone, then it’s a burden I bear… well, obviously not happily, but I accept the challenge.  I was given the strength to deal with it and so I do my best.

Now I swallow my pride.

I ask for your help. In any way, shape or form. Whether it’s donating directly using the link on the right, shopping at my Etsy store, continuing the fight for healthcare, sharing my story….

I’m an ordinary girl, fighting an extraordinary fight.  I could be anyone, but I am Holly, and this is my life, my story.