I’ve seen so many doctors and for a while actually hated them. Part of that was because no one could figure out what was wrong with me, but the biggest thing was that to me, they all seemed like they thought they were gods. Whatever they said was the final say. That did not fly with me. I must be part of the discussions and decisions being made. It’s my body. I know it better than anyone else.
Now more than ever it’s important to advocate for yourself, as health care workers are being pressed by insurance companies and their own hospitals, etc. to see more patients. Getting facts you need to help make informed decisions is imperative. I’ve told a few doctors off over the years because I felt they just weren’t listening. I’m very tired of hearing that medicine is not an exact science. I get it now, though I wish that wasn’t the case.
I’m quite fortunate to have doctors that want my input and work with me and really listen to me. My rheumatologist and her nurse practitioner want me to be part of all decisions and are very willing to answer all my questions. My internist is wonderful, as well. She presents me with options, I do some research and ask her questions. She will tell me what she thinks, but always defers to me for the final answer. We work together.
There are still doctors out there who do not involve patients in the decisions. And that’s really the whole point of this site. I don’t know if it’s because I’m a trained journalist, a curious person by nature or if it’s a combination, but I always have questions. The nuurse practitioner and I have only gotten into one argument, and that was not too long ago. She wanted to put me on methotrexate when we learned I have RA. I’ve been on it already for my lupus – twice. It makes me sicker. I’m in so much pain I can’t move. But since that was years ago when I was in Atlanta and she had never seen my reaction, she tried to force it on me. I told her I refeused take it. That is one med I will never try again. She was exasperated. She talked to the rheumatologist, which she always does, and gave me three other choices. I looked into all of them. Humira and Enbrel were on the list – both in injection form. So was Avara, which was a pill. I decided to try that first. I gave it four months and it didn’t work. So, I looked at the other two and chose Enbrel as it seemed to be less toxic than Humira.
Sadly, the Enbrel had the same effect as the methotrexate. I got much worse. I had pain where I’d never had it before – my lower leg. My internist sent me for a Doppler because I had classic symptoms of a blood clot. No clot. The nurse practitioner sent me for x-rays. Nothing showed up as out of the ordinary and my knee replacements and all the hardware, especially in my left knee, were looking good. The pain in my lower leg was some of the worst pain I’ve ever had. For eight weeks last summer I was barely able to walk and certainly couldn’t drive. Yes, I made it to Wrigley. My wonderful boyfriend would drop me off at our VIP gate and someone would meet me with a wheelchair. One day a friend saw me struggling to get across the street and brought the chair to me in the middle of Waveland Ave. in front of the firehouse. Everyone was looking after me, as I found out later.
The extreme pain I was in started while I was in Arizona. My internist and I would discuss my pain level and she eventually prescribed mega doses of two different pain killers. Neither touched the pain. When I told people what I was on, they were surprised I was functioning. I should have been high or something. But everyone reacts to drugs differently. I will tell you that I will not take morphine again. The one time I had it was when I dislocated my elbow. I was talking to an intern about medical issues as some of the nurses had recognized me from my editorials in the nursing magazine I was editing at the time. When he looked at my chart he told me that I should have been out of it because I had so much morphine in me. I told him it was only barely easing the pain.
When I went off the Enbrel, the pain started to subside. Imagine that. And then I found out that the pain in my lower leg was actually from my right hip. There are six or seven places where you can feel hip pain, it’s not always in the hip.
A second hip x-ray showed extreme progression of the RA in two years. The rheumatologist told me I had to get on something. She explained what was available and what she would recommend, but I was to have the final say. Again, I was given information to read and also looked the meds up on the web. I ruled all three out — one I had tried and it did nothing, one was too much like the Enbrel and the third had a very small chance of causing an untreable brain infectionj and I tend to fall into the “less than 1 percent of the patients who take this drug experience …” category. I know the doctor was exasperated, but she listened to my explanations and concerns and then suggested Orencia. I wasn’t keen on some of the side effects, but I was willing to try it. .
I participate in an online RA support group. I see so many times where people have just done what the doctor said to do without asking questions. You HAVE to be part of the discussion and decision. Medicine is not an exact science. You have to know your own body and how it reacts to certain chemicals and other stimuli. I hear about friends who get various diagnoses and I ask questions they never thought of. This is where I can help others. I know what types of questions to ask, first of the patient then of the doctor. It is my hope that this blog and what I am going through will help others. And I’m always happy to help out, though depending on the situation, there may be a small fee involved.
As you read this blog, I ask again that you remember I am not a doctor or nurse, nor have I had any medical training. I write from experience and hope that what I share will help others.
askmir.org 