The Doctor Appointment Packet

I have been hard at work over in Leah Land compiling a valuable resource for us Fibromyalgia patients to arm ourselves with when dealing with doctors and modern medicine. In the last two days alone two of my friends have been dismissed by doctors refusing to give them the medical care they are in desperate need of. It is INSANE how this still happens. When I was at the neurologist earlier in the week I told him what I had been up to...The Fibromyalgia Crusade...the blog...The Fun House. I told him my mission is to give the power back to the patients to receive proper care and get managed. I suggested Fibromyalgia is still dismissed by many in the medical community. He looked at me in surprise and said, "Not anymore." I told him he would be amazed at the stories I hear and yes indeed it is still doubted!

The fact that this is a messy and complex and a highly individual illness sends some doctors over the edge. They don't want to deal with it. They can't fix it so therefore they blame the patient and transfer the burden of responsibility to a mental or psychiatric condition or worse, a drug addiction. Unbelievable! Horrific! Tragic! And it is enough! We are soldiers in an army that is going to change the reality of living with Fibromyalgia. But how can we fight when we can't even get out of bed? So therefore the first order of business is to end the madness and take back our power. Take it back from dismissive and doubting and degrading doctors that we have allowed to get away with treating us horribly because we are so desperate, in so much pain, so limited with insurance and costs and just being so darn sick! We are going to kick them to the curb and seek out doctors that take their Hippocratic Oath seriously and personally. Doctors that are committed to working with us to find the specific treatment plan that works for each individual patient. I just found my first golden doctor last year. I walked into the appointment with spreadsheets and charts and symptom lists and medication and treatment records and she was a bit overwhelmed with my pro-activeness but ultimately appreciated it. We have a fabulous rapport and she listens to me, helps me, got me off Lyrica when I was told I would never get off it despite substantial side-effects. She problem-solves with me and challenges me to manage my lifestyle so I rely on addictive medications as little as possible. That is where I am at in my Fibromyalgia journey and she keeps me progressing and I am so happy to have finally found a doctor that works with me.

So The Doctor Appointment Packet I have put together is full of resources and information and suggestions and places to record your symptoms, goals and history. It has links to websites for both Fibromyalgia information and sourcing out a new doctor. It clearly states our burden of responsibility to not stop seeking until we find the right doctor to help us manage our symptoms so we can get out of bed and back to living! Life with managed Fibromyalgia is not like it was before the illness hit, but is loads better than living in excruciating pain and fog and insomnia incessantly and pervasively. We have to get this under control! It can be done, it just takes the right combination of meds and lifestyle modifications. So this is the first place we start in the long and exhaustive Crusade to change living with Fibromyalgia. Check it out and please give me your feedback as you utilize the resources and present doctors with the information provided. I want to see way more Lilacs than Amethysts out there and believe if we come at them like a hailstorm things will change, and only for the better.

Thanks for joining,
Leah
fibroblog@gmail.com

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