September is becoming my own awareness month. See, here's a secret. Whenever possible, I ignore my CMT symptoms. Days are full of activities, fun, and family time. I don't want to visit doctors or physical therapists. I don't want to research braces or medications. I am too busy living :)
Until the CMT murmurs become CMT roaring. By the time I call a doctor and make an appointment, I have usually been living with symptoms for weeks or months (or years!).
In the past, I forgot big details when I talked to the doctor. I would be derailed in the office with new information. "I know your hands are bothering you, but what is going on with your knee?" I would get flustered, or emotional. I would minimize my pain or challenges.
This September, I made a commitment to myself. I want to take care of myself. I want to pay attention and give myself the very best tools for a long, healthy life with my family. This meant visiting doctors.
This time around, I started my list a few days before visiting the doctor. With CMT, so much is invisible. Pain, strains, fatigue... All those things are impossible to show in a doctor office. So I made a document on my iPad (any portable device is easy because you can add to it from anywhere). You could handwrite or type on a computer. How you collect data isn't that important. It's the information that matters.
I thought of this like a grocery list- jot down ideas as they happen, because it can be so easy to forget what you need just when you need it most :)
My document included:
- Current medications
- Concerns: I numbered these and they included things like chronic headaches in the afternoon and lower tolerance to heat and cold
- If I don't take care of myself: This included an activity "hangover" and dizziness. Because, when I overextend my limits, crazy things happen...
- Current Challenges: This list had fatigue, memory lapses (which is a challenge but not a major concern), circulation (cold feet). This one turned into more of a fact-list while Concerns focused on areas where I hope to get help.
- Current Modifications: It's impossible to tell, in that office, how I have given up work-days, how I have been in physical therapy for months, how I exercise twice a week. All these clues might share insights that could help my treatment.
I kept it very simple, in an outline format, like this:
- slow healing
- cold feet
I could write a novel, but I don't think that doctors have time to read my novel :). My efforts are paying off in that we kick-started new AFOs that could bring me relief. I will keep you posted how that works. I get to go shoe shopping this weekend (the new braces arrive in a couple of weeks). That will be a crazy-adventure, finding cute shoes to fit braces :).
I hope this idea might help your own visit to a doctor or specialist. Our stories are so big! Keeping the details organized can help a lot.
In the past, I have kept a symptom journal on my phone. The app kept track of symptoms, triggers, and pain levels. It could print reports for doctors. Then I got distracted and stopped adding to it. Now I wish that I had kept it going. How long have the headaches been bothering me?
Sounds like I should revisit that idea.
For now, I hope this simple plan can help all of us. Is there anything I forgot?
I am contending with a few memory lapses after all :)