Invisible Disability and New Doctors

I wasn't worried. Until I got very worried. My neurologist was retiring. And I needed a new one. I would find out who everyone recommended and schedule an appointment. No big deal.

Until I thought about that appointment. What would I say? What would he (or she) think of me? Would he (or she) know about Charcot Marie Tooth? Would he (or she) care?

Would he (or she) believe me?

[pullquote width="300" float="left"]Please, please believe me.[/pullquote]

I had a few months of behind-the-scenes drama with local doctors not getting high recommendations and needing insurance approval to see a doctor farther away. And this No-Big-Deal became a Super-Big-Deal.

After all, I had been seeing my neurologist for nine years. Nine years, going from yearly check-ups to every six months trying to get ahead of worsening symptoms. Nine years of referrals to specialists. Nine years of stories. He knew me.

And that meant a lot, I realized, as I penciled the appointment into my calendar. He had nine years. I have a lifetime of stories. So many ways that CMT has impacted my path. Impacts my family. Impacts my life.

I checked in with my retiring neurologist to be sure that he sent my records to the new doctor. I also got my own copy. Just in case. Because it's always good to have a record.

I was so nervous about how that first appointment. After all, I am 'just a patient' but my quality of life depends on my support network. My neurologist is a huge part of that network. Thankfully, the appointment went well and I actually have new hope. New ideas. Hurrah!

I followed a few simple guidelines that helped a lot. And I learned a couple of tricks that will help next time.

First, I condescend my story to a page. Well, a page and a half. This helped me keep my focus and not wander into 100 side stories and anecdotes. And it helped him too. I made each section a bulleted list with a few words. The long story was in my medical records. These were the Cliff Notes :)

I brought all of my braces (AFOs and wrist supports). I learned that I should bring my medications (below).

Here is what I included in my All About Me:

Medications: I listed these, then I had a couple of typos, which caused confusion. His suggestion (brilliantly simple) was to put all prescription medicine bottles in a bag and bring them. Then all the little details (like is it suspended release?) could be easily found.

Primary Concerns and Challenges: This was a good process for me. What are my biggest challenges? And it came to (surprise-not-surprise) chronic pain and fatigue. I also listed depression/anxiety. I listed where I had to pay attention (arthritis in feet, hips, etc.) I realized that I don't have a contingency plan for Flare Ups and Breakthrough pain. We are working on that.

Co-Conditions: Here is where I listed Asthma and Chronic Bronchitis, Seasonal Affective Disorder and slow healing. Anything that I received treatment for through another doctor or specialists. I wish CMT was my only challenge :). I wanted to show the bigger picture.

Modifications and Support: Here is where I listed that I visit the gym a few times a week. I stretch and exercise. I am on permanent disability. I recently had to resign from part-time teaching thanks to CMT exacerbated symptoms. Here is where I listed highlights of how my life is already accommodating these challenges. My AFOs and braces for my wrists. And that I take vitamins (though I probably should have brought those bottles, too...)

Secondary Challenges: This is where I put weakness/numbness in my hands. Insomnia because I am wired trying to stay awake all day. And hyperextending. I didn't write much. Just the little stuff (haha, none of it is little. Compared to the big stuff it feels little :))

And I added a couple of notes about a medicine that we tried to get for years but insurance wouldn't approve it. And my possible sensitivity to medications. They work great or they are a disaster.

I couldn't keep it a page. It was still brief enough that we could talk about the things that really mattered. And it helped. Because he said that I don't present many challenges. My strength seems good during the exam. Yet he could tell that CMT has big impacts on my life. And he wants to help.

Hearing that was such a relief. I cannot even share how much power there is in saying, "I believe you."

And I know it's a learning journey for both of us. I learned to bring my medicines.

I see him again in three months. I will probably write all of my notes again. To see what changes.

Meanwhile, we are working on a referral to CMT specialists even farther away. Just to see if there is anything we else that we can do to help along this journey. I am building a new team. And I am optimistic. Which is way better than nervous :)

What a strange and winding road...

Wishing us all success and good support on the way :)