there’s a lady who’s sure

April 11, 2012

Dear Beth,

Writing and relating to people are two skills I possess which I am inordinately proud of. I’m sitting at the Community Center right now, with very little time in between editing the Summer Programming Brochure and running the Facility Reports, knowing that my husband is coming to your Open House, not wanting him to go empty handed. I have things to say to you. I just wish that I had the time to sit and compose all of the beautiful things in my heart. I know there are things I’ll forget.

No doctor (or nurse, or therapist) has ever made me feel as validated as you have. From the start, when you took care of me in the hospital, you volunteered to take over my headache care, because you wanted to. When I felt so many wanted to wash their hands of my frustrating case, you wanted to take it on. You always saw me and not my headaches, which is quite a paradox, since there are times when my identity is inexorably wrapped up in the illness.

There are two moments which stand out in my mind when I felt most completely validated by your care of me – I can’t think of a better word than validated – “believed” also comes to mind. The time you agreed to write the letter for me to take with me to the ER, probably knowing the consternation that might cause the doctors there, yet you did it anyway. That indicated to me how much you believed that I did in fact need those certain medications once per month when my headaches got out of control. You truly believed that my pain was that severe. The other moment, the most obvious one, was when you said that I might be a good candidate for ovary removal. Such a surgery for migraine is not unheard of, but is controversial and rare. You said “If Dr. P doesn’t want to do it, we’ll find someone who will.”

You are the rare person who was able to see the severity and frequency of my pain AND see me as a separate individual. As well as how the two are wrapped together: me and the headache. You understood that the most important thing to me was trying to live a somewhat normal life; to hold a job I enjoyed and to take care of my children. And that I would need certain medications to accomplish that as well as every other possible therapy or method you could think of. You never gave up. You never seemed to tire of me or my situation. You became a friend. I realize now that part of that empathy and understanding may have been due to your own struggle with MS. I sort of knew because I had been told by another of your patients (Leah) which I am glad of, so that this didn’t come as so much of a shock.

I am so sorry that you’re having to give up a calling which you obviously love so much, but I’m glad that you will be able to devote the best of your time to your family. And now in a role reversal, I have empathy for you, because no one understands chronic pain and illness like another survivor (so to speak). Of course, MS is much more severe and complicated than migraine. And I am so sorry that you have been silently enduring, holding on for us, your patients, for as long as you have. Invisibly suffering. It breaks my heart for you. But, at the same time, you are the bravest woman I know and you have made the best choice for you and your family. Instead of pity, what you should be offered is congratulations.

Kelly and Deanne just walked in to take their Spin class here. I met with Dr. K this morning. The good news is, we found out today that my insurance will absolutely cover Botox treatment for migraine, and I am going to schedule it with her as soon as possible. The bad news is I didn’t click with her or feel that she understood my needs, coming from a DO background with more holistic views. Every doctor is different. I’m not saying that I wouldn’t try new things, even Chinese Herbal Compounded Combinations from some Ann Arbor neurologists who used to work at U of M. But I need to have some medication as back up. I am going to make an appointment with Dr. M to see what he says, and probably the best thing to come out of this is that I have an appointment with Dr. T in August – the first she had available. But if I can’t have you, I really want a neurologist, an expert in the field, even one who is fairly inaccessible. So that is my plan. I realize that this isn’t your concern anymore and I don’t want it to be, but at the same time, I kind of thought you might like to know.

I need to email this letter to John so he can go to the Open House and deliver it to you. I wish you and your family all the best, and I thank you from the bottom of my heart for validating me, believing in me, and essentially saving my life. And I know that I am only one of countless patients who feel this way about everything you’ve done for them.

All The Best,
elizabeth

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