Welcome to My Pity Party: Envy, Gratitude and Life

The other day I had a pity party for myself. Sorry I forgot to invite you.

I’m on an injectable medication that costs $1800 a month. The medication works well, and has given me my life back.

Years ago, I ran 6 miles a day, and swam competitively. Then a rheumatologist diagnosed me with ankylosing spondylitis and lupus.


One month, I couldn’t walk at all. I stayed on the couch. When I needed to use the restroom, I rolled off the couch and crawled on my knees down the hall.

I tried dozens of different treatments, both naturopathic and westernized. Herbs, supplements, and acupuncture. At age 28, I almost drowned in a landslide of discouragement. Eventually the doctor shot each foot with cortisone and continued to work on finding another solution.

The road of meds and treatments felt steep as a climb on Mt. Rainier. And that was simply to walk, dress myself and use the restroom.

I remember telling God, at age 28, “If I can’t use the restroom myself, please take me now.”

A few years later, I found a medication after I tried 14 others that failed me. Some caused ringing in the ears, others caused mouth ulcers, and some caused me to vomit and get headaches.

So when I found “the one,” I felt like a kid at Disneyland. The pain was bearable, and I could live a semi-normal life about half the time.

Eventually this caused other problems, and I had to go off.

So I was starting over. Many days, I spent on the couch with an ice pack on my chest. Otherwise I couldn’t breathe. I hadn’t experienced a full night’s sleep in a year because the pain woke me up throughout the night

A few years ago,  my rheumatologist said he wanted me to try a new drug. This injectable drug works amazingly well, and now I’m doing better.

We don’t qualify for assistance, and have a large deductible. I have an amazing job, but work part time. If I increase my hours, I get a flare-up and wind up in Couchville again.

I sat at my computer and wrote a letter to the medication company. Tears streamed onto my fuchsia colored computer keyboard as I told the drug company I would have to sell my modest home to pay for medication.

A few days later, the drug company called me to say I would receive the med free for a year.

Praise God!

My soul danced with gratitude on that sunny summer day,

That was a year ago, and now I have to re-apply. I felt sorry for myself for a slice of time.

And then I noticed him:

A quadriplegic.

Then hope flooded my essence, and my eyes filled with gratitude.

But this time, the tears sang a song of gratitude.~

(For more of my story, read my book: 

Tooshie:Defeatung the Body Image Bandit The book offers a taste of what it means to go from athlete to health challenged. Plus a bonus of how a bicycle crashing my face changed my life.) 

 

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