Posted in rheumatoid arthritis

Misdiagnosis


It was September 2006 and as I laid on an operating table with nursing staff around me prepping me to have my gall bladder removed, I wondered how I got there. I did not have gall stones in my gallbladder. I had simply had a gallbladder that did not work. I wanted to know how this could happen but no one could offer me a solid explanation. For years, I dealt with kidney and liver infections and again, no one could understand why I had so many reoccurrences. In July 1998, I lay in a hospital, seven months pregnant, and wondering how I had gotten Hepatitis A and no one around me (my children, family, friends, etc.) showed signs of the disease. Why was I so susceptible to any and every infection, illness, and ailment known to man?

To this day, I don’t understand and two years after two diagnoses, I still don’t understand. I still don’t understand how many doctors missed what was going on with me and sent me home with medications for every ailment known to man: asthma, depression, anxiety, thyroid issues, IBS, etc. No one could offer me an explanation on why I kept getting sick and why I never felt healthy. This goes back all the way back to my high school years and perhaps even through grade school.

Sometimes, I ponder at why a baby at six months ended up the hospital near death, and miraculously recovered. Well, that is the story my mom tells and one I will never understand. The point is, I was sick for as a long as I have been on this earth. Many trips to the emergency room when I was a child revealed nothing and the doctors always told my mother that it was things like not eating healthy, growing pains, stress, anxiety – and in the words of my mother “what kind of stress can a child be under?” (Insert Mediterranean accent when reading Mom’s quote.) My mom believed that I was a survivor because as sick as I was, I always managed to live my life. I was always a good student and I was active in student government and school newspapers in both high school and college. I graduated from high school and college with honors despite the fact that I was “always sick.” I had set backs because of my health, a failed marriage, and being a single parent, but I never stopped believing that I could be successful.

Not giving up is probably the biggest reason that I was finally diagnosed. I refused to believe that what was wrong with me “was in all in my head.” I blog about my experience with misdiagnosis after misdiagnosis and I find people approaching me, emailing me, and commenting on my blog about their conditions and how frustrated they are with multiple misdiagnoses and being told that whatever is wrong with them “is all in their head.”

I don’t have any answers nor do I have a medical understanding about the 100 autoimmune diseases out there that can wreak havoc on the human body. All I know is that no one was a better advocate for me than me. I never stopped believing that something was wrong with me and that whatever it was, it was not all in my head. The only advice I can offer to anyone going through what I went through is to advocate for yourself and make your voice heard. Write down your symptoms on the days that you feel downright awful and share these with your doctor and whatever you do, do not take the answer that it “is all in your head” because I am pretty sure it is not.

I often wonder whether miscommunication was the reason it took so long for me to receive my diagnoses, and even though the answers stare me in the face now, it doesn’t give me closure. I can only take comfort in the mornings that I awake not felling downright awful, when my joints don’t scream out for mercy and aren’t incredibly stiff, and when I can make it from my bed to the bathroom without having to use the walls as support. I don’t have any control of my conditions or how I feel on any given day so I control what I can and usually that is my response. My attitude plays an important part on how I feel on any given day and the only advice I can offer is this quote by Charles R. Swindoll.

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company… a church… a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you… we are in charge of our Attitudes.”

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2 thoughts on “Misdiagnosis

  1. Lana, you have, no doubt, had a tough life with all of the illnesses, perhaps that has helped prepare you to deal with what you are going through now. I have read about many misdiagnosed patients, I was improperly diagnosed with synovitis before discovering I had RA. I feel that there are too many doctors going through the motions of practicing medicine. It is easier for them to give you a pill and if that doesn't help, come back in 3 weeks than to roll their shirt sleeves up and figure out what the real problem is. I also believe in getting a second opinion, it took me a year to switch GP's after being diagnosed with synovitis and continuing to hurt. The first visit to my new GP was when I discovered that I had RA. No matter how bad you are, your attitude does play a huge part in how you feel. Hope you feeling better today.

  2. I never realized how lucky I was to be dx'd at 2 years old…the real battle didn't come until later when I went from very little symptoms to 8 jillion over night.It is so difficult to be told that you are crazy. My RD was sure I was nuts when my ankle started hurting. Told me he would only treat me for pain.Eventually after pushing for a new doctor I was able to get to a foot/ankle surgeon and surprise the joint was being eaten away by RA…good thing it was all in my brain.I would love to show up at my old RD's office and show him proof…but then that make me as much of a jerk as he was.I just feel really lucky in the end that I was able to get the help I needed!!

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