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.
P.S. We've started a Facebook page for Sausage Toes and Scales!! If you want to be kept up to date on what's going on come like us! Sausage Toes and Scales Facebook Fan Page
We also need the private sector to step up and take notice. These diseases do not get anywhere close to the kinds of private donations that other diseases get. Improvements in breast cancer and diabetes research & treatment came with huge support from private citizens and organizations. We need to rally around autoimmune diseases, raise awareness, and get the private sector involved! Don't even get me started on the government!! You know who this is. I can't remember my Google password, so am signing in anonymous. LOL
ReplyDeletehmmm who could this be.... lol Hi Jeanie! Yes I agree. Advocating for our diseases to bring public awareness is something we all need to do within our ability.
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