Wednesday, January 30, 2013

Sweet nothing.

Tonight's blog is inspired by the song "Sweet Nothing" by Calvin Harris with Florence Welch (of Florence & the Machine).

When my daughter and I were driving to/from Phoenix this song came on several times.  She sang it and was obviously touched by it.  To me it was a good song, but didn't really touch me.  It seemed to be about a one sided relationship which we've all been a part of at some point.  The yearning to be heard and understood.  Wanting to believe when someone tells us they care, but knowing those words are empty without action.

As I was driving to meet my honey for our Tuesday poker night the song came on again.  Suddenly mid song I realized this is what I'd like to scream at the medical community sometimes.  I feel like I'm Florence crying out to be heard, but getting lip service about what is in the future to give me relief in my Psoriasis and Psoriatic Arthritis.  I adore my Rheumatologist and he has done everything available to try to help me.  Please don't think I am referring to him in this feeling.  I am talking about the researchers, pharmaceutical companies, and health organizations that give us hope that feels so empty when suffering day in and day out after trying every ware they've sold me.

I look at my last 10 years of care, and the amount of money that has gone into trying to "cure" me is staggering.  A rough estimate of just my BIOLOGICAL medications since October of 2004 is over $400,000.  That doesn't include prescription pain meds, NSAIDs, DMARDs, topical steroids, inject able steroids, doctor visits, or holistic/naturalistic treatments.  I'm only referring to my treatments directly related to Psoriasis and Psoriatic Arthritis. I did have a little over 4 years I would be considered in remission, but here I am less than 10 years from diagnosis of PsA and I am in full blown unstoppable flare.  Lets call it a half million dollars and I am not cured.  I am not improved.  I am not functioning.  It feels like I've heard a whole lot of sweet nothings.

I pray constantly for myself and anyone who has these diseases that we do have hope in the future, but right now I feel like I'm screaming with a broken heart to someone who has empty promises.

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