Monday, June 10, 2013

Day 10: Migraine Awareness Month #MHAM

People always say "it takes a village to raise a family". I tend to believe that everything takes a village. Managing my chronic migraines surely isn't something I could do all on my own. Here are the people who currently make up my Migraine Care Team:

1. My husband is the most active member of my care team. He is on the front lines every single day. He listens when I need to vent or verbally process this crud. He doesn't fuss when I can't keep up with household chores. He doesn't mind having cereal for dinner from time to time when I just can't manage cooking. He appreciates and loves me even though my chronic migraines and fibromyalgia impact his life.

2. My migraine specialist at the Mayo Clinic. Because of the distance I only get to see him once or twice a year but he is my access to both preventative and rescue medications. Even with 7 years of failed treatments under my belt he hasn't yet given up on me. His thinking can be rather ridged but when we disagree he doesn't push me and doesn't dismiss me. Now if he could only help me...

3. My pets are another big part of my care team. I know I say it with some frequency, but only because it's so true. Petting them, watching their antics, seeing their adorable faces looking at me, walking Gypsy, and feeling their love, well, it's good for the body and the soul.

4. My friends are another part of my care team. They still see me and not my disease. Most of them are social workers and so they know just the right kind of supportive things to say regarding my migraines and fibromyalgia. Talking with them helps me to feel normal and reminds me that I'm still the same Emily deep down inside. I never feel more like a full person than when I'm lost in conversations with my friends. The only real problem here is that all these dear friends live 8 hours from me so I rarely get the pleasure of their company. 

Much to my displeasure there is one big hole in my care team: the role of primary care doc. I've seen a couple docs since moving to St Louis two years ago but things quickly seem to fall apart. I get that I'm a difficult patient because I live with two chronic pain conditions that have not responded to treatment, plus I know more about both conditions than almost any PCP. They don't know what to do with me and NEVER seem willing to partner with me to manage the big picture. Next time I try a new doc I'm going to try a radical new approach and see how it works. I really do want a great relationship with a PCP.

Who is on your care team?

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project

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