Where are My Ruby Slippers?

At the very tender age of 25/26 years old I was informed that I had Crohn's disease. This is an auto-immune disorder that affects my entire gastrointestinal tract. This is a chronic illness which means I will always have it. There are remission periods and sometimes they can last for years at a time. But my case is special, of course. I have a really bad case of it and my doctor back in California said he was surprised to see me walking sometimes. I refused surgery for a very long time and just as I was moving out to Florida I was informed surgery was pretty much imminent. I was on transfusions of Remicade every 8 weeks and I still wasn't in remission. Shortly before this I was told by my Gastroenterologist that I had a form of arthritis that was caused by my Crohn's. This was virtually untreatable because most arthritis patients take Ibuprofen or some other NSAID (non-steroidal anti-inflammatory drug) and these drugs are detrimental for Crohn's patients because it eats away at the intestinal lining and since my intestines are already infection ridden it's just a bad idea.

So every day I wake up feeling like a corpse in a coffin - stiff, brittle. I can't take anything for the pain except for pain killers and since I can't be seen here in Florida due to the shitty healthcare system out here I have none. Before I got here I was taking upwards of 25 pills a day. Currently I have none of those. I have been to the hospital here in Florida via the emergency room around 4-5 times and have racked up a bill somewhere in the $30,000 dollar range (if not more).

And all I want to do is to get back to California to be on their shitty CMISP program. Any health care is better than no health care.

I was placed on temporary disability in February of 2008. Little did I know that temporary disability has an expiration date. In February of 2009 I received a letter with my last paycheck telling me I had no funds left in my disability "pot" and therefore couldn't be on disability anymore. I called Binder & Binder (the national disability advocates) and have been working with them since March of 2009. I have been through three case workers, countless denials, and am not facing a court hearing with a judge and everything. Only to find out the damn LAW OFFICE doesn't have any of my medical records yet. It's been OVER A YEAR. What the fuck have they been doing for the last 15 months????

So I have spent the last 5 hours on the phone to UC Davis Medical Center, CMISP, and my representative at Binder and Binder. Tell me why I am paying these people 30% (if I win) for ME to make all the calls?

Meanwhile, I'm here, writhing in pain, unable to keep food down and also unable to see a doctor. All I fucking want to do is get home. If I had my way I'd pack up now, whatever could fit in the car, and just start over. Gah! But there's finance issues standing in my way. As always. And if I could just find a damn money tree maybe I could learn what it's like to not stress about money or my health for once.


So I continue to play the waiting game once more. Waiting for loans, for boxes to pack things, to find a trailer, and to get on the road. Waiting for CMISP approvals, doctors visits, doctors offices, even worse: clinics! Waiting for tests, treatments, infusions, surgeries. Just waiting.

One day I'll actually get there.

OH did I mention I have a gall stone potentially the size of KANSAS cause they say it could get lodged and be fatal.

"But we won't touch you because you don't have medical insurance."

There's no place like home.