Since my last two posts touched on medical issues I thought I’d round out the week with some final tips that helped me through my long-running medical journey. First, if possible, ask someone you trust to escort you to doctor’s visits. After being released from the hospital I initially attended all of my doctor appointments alone. At the time doctors had absolutely no idea what had caused my medical problem and I was absolutely terrified of what the doctors would find. I had a hard time remembering what I wanted to ask the doctor and an even harder time listening to what he said.
Eventually I asked my husband to attend appointments with me. Thankfully his employer understood the gravity of my medical condition and granted him the time off. My husband brought a notepad with him to every visit, and listed the questions he wanted to ask, long before we arrived at the doctor’s office. Then he’d ask the questions and write down the doctor’s answers so that we could review them and ask follow up questions if necessary.
In my case, I had been ignored by my primary physician for weeks prior to my visit to the emergency room. In fact, in two weeks I went back to the doctor’s office four times, fully knowing that something was horribly wrong, but unable to get any answers from my doctor. This caused me to lose all trust in doctors and the medical profession, such that when I finally ended up in the ER I didn’t know who to trust and became skeptical of all of the advice I was given. I needed my husband to calm my nerves and be the voice of reason in an utterly traumatic time in my life. If you aren’t married or your spouse can’t take the time off from work, then ask a parent, family member or a good friend.
Also if you have any type of chronic problem, even if it’s just a pain in the back or the neck, I urge you to create a medical time line. It took doctors over six months to determine what had led to my condition. Between the first visit to the ER and my subsequent surgery seven months later I visited over 35 doctors and specialists. It became a nightmare to try to remember all of the medical tests and results over this period of time and to relay the information back to doctors who were hearing the story for the first time. So I decided to create a medical time line that provided details, like which doctor I visited, what they specialized in, what tests were run, as well as word for word dictations of the results of those tests.
I also asked for copies of each and every medical test that was run and received all of my medical records from my various hospital visits. This saved a lot of time and money, because many doctors wanted to rerun tests that other doctors had already performed. Also it can take days for one doctor’s office to fax the test results to another doctor. By having the reports on hand I was able to prevent unneeded tests and get the doctors thinking of other reasons for my disorder.
In the end, you must be your own medical advocate. Along the way I had to cry and fight with doctors to get them to listen and two years after the fact I am still suffering from my initial ailment. Above all else, find someone to talk to about your experience. Being sick can be desperately lonely.