Doctors are not gods

May 4, 2016

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.


Something else is wrong….

May 3, 2016

As I’ve said, I was pretty sick when I moved back to Chicago in November 2004, almost exactly 20 years after I had moved away. I was not used to the cold Chicago winters. I was living in my dream condo, after leaving my dream house. I was up on the 40th floor of a condo on the lake. My view was north and northeast. I set up my home office with my desk facing the sliding glass door so I could see my lake. On very clear days I could see Milwaukee with my binoculars. And I could always see when things were happening in Evanston, where my parents still lived.  I loved the condo and was so glad to be back home.

But there was a huge problem! My lupus was acting up and I had to try to get other medical issues caused by the lupus and various medications under control. I never felt well. I finally had my other knee replaced and seven weeks after surgery I was in Mesa, AZ, at spring training. That was a miraculous recovery!

There is no cure for lupus. You treat the symptoms. I’ve come to terms with that. But while treating the symptoms, the side-effects of many meds have caused other medical problems for me.

 

 

Over the years I’ve learned to listen to my body. I’ve learned to live with extreme pain. In fact, I can’t remember the last time I was pain ree. That’s kind of sad. But I do live with it. When the pain is really bad, I will resort to taking a pain killer, but try not to. Many people think I try not to use pain killers because I don’t want to get addicted to them, but that’s not really the case. I don’t have an addictive personality. The real reason I try not to take pain killers is that I need to have what I consider a baseline for pain. I have a very high pain threshold – most people would not be able to live with what I consider tolerable. If the pain level increases, I know that the weather is changing, it’s getting really cold or I’m going into a flare. Pain is one way your body tells you to slow down.

Sometimes listening to my body was taken very literally. There was the day I predicted rain to The Weather Channel people. I have loads of stories like that. But one that always makes me smile is the evening I was on a cruise with a group of girlfriends. Four of us were sharing a suite and one night we were sitting on our balcony having some wine and talking. Suddenly I announced we were heading into rain. How did I know? My knee was telling me. From then on, I was asked what my knee was saying. It was almost like it had a life of its own. It served me well when one friend and I were walking on St. Martin and I knew some rain was coming in. Each time I felt a wave of rain coming, she and I would duck into a bar for an island beer.

After all these years I know what normal lupus pain is for me, so when I started having unusual (for me) excruciating pain in my hands, right hip and other places, I knew something else was going on. I also had a terrible tingling in my right hand and arm that was not only annoying but increasingly painful. It was not as bad in my left hand and arm. I’d had a hip problem for a few years. Two years ago an x-ray was done on my right hip and it showed arthritis. No one seemed concerned. A few months later I finally had a test done on my hand and arm, which showed nothing – or rather, no injury. I knew there was no injury. I knew something was wrong.

I needed to make my doctors understand that I was going through something very new. My fatigue was impossible for me. I had no energy. I was in REAL pain. So, my rheumatologist sent me for an ultrasound on my right hand. Of course, it was a day when my pain level was down to tolerable and I figured nothing would show. I was wrong. There was a lot of inflammation in my hand, which was quite visible on the ultrasound. I was diagnosed with Inflammatory Arthtitis.

The next step was to find out whether or not I had Rheumatoid Athritis. When the tests came back even I knew the answer. Rheumatoid Arthritis. A normal rheumatoid factor is between 1 and 14. Mine was a whopping 192! But I got a triple whammy. Not only did I have lupus and new diagnoses of Inflammatory and Rheumatoid Arthtiris, but I was also diagnosed with a hybrid called Rupus – a cross between Rheumatoid Arthtirs and lupus. It attacks the connective tissues for the most part. Ah ha. The original diagnosis of Connective Tissue Disease from 1985 was correct, as was the diagnosis that the lupus was attacking my connective tissues. Another x-ray was taken of my right hip to compare with the one from two years before. This time it showed extreme progression of the RA. My rheumatologist said I had to get on something to at least slow the progression of the disease. She recommended three meds and told me to make a choice. She gave me information and I looked a lot up. I had already tried two different meds – one did nothing, the other made me much worse, so I had to really think about what was going on.

Big life changes were occurring and I needed to get a grip on what was happening so I could figure out and mourn more losses. It was time to dig out the course material from my lupus self-help classes and give myself a refresher course.