Saturday, 12 July 2014

Dear Jenni

Dear Jenni,

I've read your blog post (found here) a few times now, and though I have not commented on it, I was deeply troubled by it. I hope you do not mind my sharing of your post in my blog, as well as my open response: I do this because the things you wrote about the nonexistent care you have received troubles me.

Being without a rheumatologist for 17 months, denied treatments and not receiving hydrotherapy that was promised to you is completely unacceptable. Although getting appointments and such can take an awfully long time, the amounts of time you describe is not only ridiculous- it is very dangerous. Autoimmune diseases of any sort are an emergency- yet, you are slipping through the system, left out and utterly walked on. This is not health care and you deserve far better care. Due to my psoriatic arthritis, I go to  see my rheumatologist once a month- sometimes every two months if I'm doing particularly well. I take Enbrel, which I only found worked after trying medicines that controlled the disease and not just the pain. I've gotten all the scans I've needed, had surgical consults and more. You deserve just the same quality of care and attention.

I'm not particularly sure of what you should do, to be completely honest. Perhaps waiting for a new rheumatologist is the only thing you can do for right now. But it doesn't feel like it should be left at that- it is too passive a route. That is exactly why I share my reaction. Normally I'm pretty private about some things, but my anger for your lack of care will not be: This needs to be shared. There needs to be attention called to this problem. I hope by sharing this, more can be informed about this problem with healthcare that affects so many others as well.

Don't stop trying.
-Elizabeth

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