October 31, 1991. That date will be forever burned into my memory. Halloween night. Our daughter had turned one only a week and a half earlier. My mother and step-father were visiting. They sat in the kitchen with my husband while my daughter and I danced in the living room. We were laughing, having fun, care-free. When we returned to the kitchen, I put my feet up on another chair and noticed that my ankles were swollen. Not a little bit, like end-of-the-day, on-your-feet-too-long swollen, but HUGE. Bigger than my knees. Something-isn’t-right swollen.
The doctors had no idea what was wrong, other than to say it was some type of arthritis. No idea what type (there are over 100 kinds, I learned). No idea what caused it. Although I learned, years later after switching to a different family doctor, that mine at the time labelled it as “hysterical mother syndrome”. Let’s just say it’s a good thing that I didn’t know about that diagnosis at the time, or I would have shown him just what hysterical looked like.
At that time, Kitchener-Waterloo had three rheumatologists. Over the first few years, I saw all three. Because I rejected each of them for various reasons. Right now, it is a bit of a blur and I’ve forgotten details. Those may come back to me as I document this history.
Rheumatologist #1 — “Go to the hospital. Go there immediately. Get admitted and I will talk to you there.” Of course, my heart was racing and I was terrified. I was admitted. He came to see me for a few minutes and told me he’d talk to me later. That must have been a Thursday. On the Friday – nothing. Medication from the nurses. That was about it. Then on Friday evening, all the lights in the ward went out and I was left alone. Totally alone. All the other patients had been sent home for the weekend. All the nursing staff went home. No one had said anything to me. A couple of hours later, a nurse from the next ward over came to give me supper. And explained to me that they’d be taking care of me over the weekend. And questioned why I was there and hadn’t been sent home by the others. And told me that my rheumatologist was out of town and couldn’t be contacted. He didn’t even have the courtesy to tell me that.
Enter Rheumatologist #2 — Filling in for #1 that weekend. The nurse called him and asked why I wasn’t allowed to go home. I wasn’t that ill and could be treated as an out-patient. He agreed. Without seeing me. Said that he would call in a prescription and gave her the directions over the phone, which she reviewed with me. I’m very careful with making sure I understand what has been prescribed, dosages, side effects. I knew that the drug I was being given (Prednisone) had some potentially serious side effects and needed to be taken according to directions. When I got the the pharmacy, the directions were different than what the nurse had told me. I called the doctor. He didn’t return my call. I called again. He didn’t return my call. I called a third time. He called back and raged at me because this hardly constituted an emergency. Yup – guessing at how much medication to take was just a normal, everyday occurrence to him, apparently. Our relationship didn’t last long.
Let’s try Rheumatologist #3 — Things started out well. He seemed to be conscientious. He talked to me. He gave me information. By this time, my knees had also swollen to far bigger than knees should be. He wanted to take a sample of the fluid to help identify what was going on. Sounded like a good idea. Appointment at the hospital booked and confirmed. Patient shows up at scheduled date and time. Doctor wasn’t anywhere to be found. Administrators of the area apologize and try to track him down. An hour and a half later they found him. Not at the hospital at all. He’d forgotten about my appointment and was off doing something else. No word of apology. No indication that he had inconvenienced me. No patience for being treated like this – patients deserve respect as well. Appointment #2 a couple of weeks later. He did arrive for this one. Had no idea why I was there or what he was supposed to be doing or that he and I had spoken at his office about my history. End of relationship with Rheumatologist #3. When I went back to my family doctor, his question was “What did you do this time to upset another doctor?” End of relationship with my family doctor.
That’s how it started and some of the initial history. Rheumatologist #4 entered the picture but I’ll cover that in another post.
Through all of this, I did learn some valuable lessons.
- Document your medical history. I didn’t do this at the beginning. Because when something happens, we think it is going to be taken care of, be gone and will never return. One never knows what can happen and what can manifest. Keep a journal.
- Expect to be treated with respect and concern. In fact, demand it. More about this later as well. Because, no – this isn’t the end of that lack of respect and concern from doctors.
- Be involved in your care and treatment. Ask questions. Get answers. If you don’t understand, keep asking questions and getting answers. If that doesn’t happen, don’t be afraid to look for another doctor.
I didn’t learn these lessons until much later and share them now in the hopes that others will learn from my oversights.