We have reasons for everything we do, don't you think?
All the time, we are making choices. And, even in the little things, as we prepare to do something, we have a reason why we want to do it in the backs of our minds.
I have kept symptom lists for five years, ever since my injury. (Note: I rarely call the event when I broke my neck an "accident." I "choose" to call it an injury and not an accident, since I don't believe in circumstance or coincidence).
With what I have going on, it is manifested in many ways. And a symptom list is usually at least two pages long, single-spaced.
With every new doctor visit, I've given them a list of my present symptoms. I suggest every patient with a complex case do the same. Handing these sheets to disinterested doctors year after year didn't seem to make a lot of sense to me, but I felt strongly driven to do it. My thinking at the time was always: "At least, Mr. Doctor, you have this in your file. You can never say that I didn't tell you what I was experiencing. You may never read this, but at least it's 'on the record.' "
And after five years, I was blessed to see at least one reward for my efforts.
I've written here about being evaluated by 3 "Agreed Medical Examiners"-- three specialists (an orthopedist, a neurologist and a neuropsychologist) who occasionally see me and keep track of my situation and give their reports to Workers Comp. This allows for consistency and unbiased management of my care. Both sides, the patient and the insurance company, have agreed to accept the word and opinion of each of these specialists.
After seeing these AMEs last September, I requested copies of their lengthy reports (patients, remember you have the right to have copies of ALL reports, test results, and even notes that pass between doctors concerning you, a right given to you by the Freedom of Information Act).
The last one to come in was from the orthopedic surgeon. And he mentioned the symptoms lists. That I have been consistent in stating my symptoms over all this time. And the fact that I was turning in lists made it clear to the educated examiner that, all this time, I've been searching for an answer to the question of why I keep deteriorating in spite of doctors telling me it was all "emotional" or that I am a "perfectionist who can't accept less than 100% of recovery from my injury."
He stated that it was not until I was seen by The Chiari Institute that I finally received the obvious answers.
So...I know the answer now. Why do I prepare a symptom list to take with me and give to the nurse practitioner in NY before my fusion surgery in June? She will be asking me for all of my symptoms, so having a list with me will ensure that I do not forget.
But, I just thought of a new reason for keeping this list-document open on my computer, ready to accept additions of the big and small pains and physical events that I experience each day.
A new reason.
After my fusion, I'll be able to go back, look at this list, and realise just how bad I used to be. I'll be able to say, "This is gone...check! This is gone...check!" It's all too easy to forget how bad things used to be when we are out of that situation. Just watch an abused wife whose husband dies and notice how she forgets the bad and remembers only the good about the man who gave her so much misery for so long.
I remember another quote: if we could remember pain as it really is, there would be no more second children in a family.
It's a good, positive reason-change. I feel good about it.