Posted in Fibromyaloga, rheumatoid arthritis

Frustration


It was December 1998 when I waited for test results at Hadassah Medical Center in Jerusalem. My former mother-in-law decided to tag along, and I really didn’t have a choice since I usually got sick and near fainting on the bus or cab ride home. The doctor I was a seeing was supposed to be a top immunologist with the hospital. He came into the examination room, sat down, stared me up and down, and simply said “Hummm” which appeared to be as long as eternity if you ask me. Then, in broken English (I didn’t speak Hebrew), he told me that my test results were normal and that there was “clearly nothing wrong” (yes, he used those words) with me. At that moment, sweat consumed every inch of body and I thought I would have an anxiety attack right on the spot. I tried to speak, but no words came.

At that point, the immunologist asked my mother-in-law to leave the room. I asked, “How is this possible?” I clearly knew something was wrong with me and then he looked at me and said the words no patient wants to hear. “I am absolutely certain that you are physically healthy. However, I can refer you to a good physician in our psychiatry department.” “No, that will not be necessary.” I told him as I proceeded to leave the examination room. He stood in front of the door, and pointing to the door, he asked if I was under unusual amount of stress. I remember it took all the courage inside of me to tell him, “I get that my life is complicated and stressful. I am in American leaving in a country where I barely know the language, but with all due respect, I know that something is physically wrong with me, and if you can’t help me, it is time for me to leave.” The pain and the sickness that I was feeling was not imagined, but I was being to told to accept that it was. That was the one of many long and frustrating battles with the medical community I had to endure in the way to a diagnosis that took nearly ten years.

I decided after that incident that I would not visit any more doctors and to try to deal with my health on my own terms. My marriage ended because of my health, and in 2000, I returned to the states with an infant in tow. My ex-husband called me “defective” and for a long time, I believed I was. When I left Jerusalem, I also left behind my three daughters as I did not have many options. When I filed for divorce and custody of all my children, and proceeded with the Hague convention guidelines to regain custody of my daughters (the three children I left behind), my ex-husband’s attorneys threatened me with my so-called “mental instability,” for which they had documentation, if I did not give up the quest to regain custody of my daughters and that in the process, I would also lose my son. So, I gave up any custodial rights to keep my infant son. It was a choice that left me with a permanent void.

By 2002, my health had gotten much worse and after many doctor visits about my multitude of symptoms, I started to believe that whatever what going with me was all in my head along with my medical providers. However, all the anti-anxiety and anti-depression medications only made me sicker so I weaned myself off those medications and decided that my quest to find out what was wrong with me clearly was not all in my head. For the conditions that were actually confirmed, I was given medications from thyroid to asthma to IBS medications which only made me sicker.

Two years later, I found myself in an emergency room because I could not breathe and with the worst imaginable pain in my shoulders and in my arms. All of my symptoms pointed to possible heart attack, but tests revealed nothing, and I was sent home with a referral to a behavioral specialist as the doctors told me it was a panic attack. Except, there was one problem, nothing set it off.

I was at this point at the end of my rope, and even through I had moved away from Israel back to Ohio, my former mother-in-law managed to find her way in the picture further complicating everything I was already going through. What I remember clearly through all this turmoil that was not my life was my mother telling me that I wasn’t the “tough girl” she raised. So, I did the only rational thing I could think of, I moved away from all the drama that was consuming my life at the time.

I moved to a small rural town in SE Pennsylvania and didn’t even give my own mother my address. Away from all the drama that consumed my and my son’s life, I started to see things more clearly and for the first time in a long time, I knew that whatever was wrong with me was not in my head. I felt physically sick and I was in a lot of physical pain, and quite often, there was nothing to trigger this. For three years, I keep getting sicker from kidney infections to an infection in the liver and upper respiratory infections several times a year. I could not sleep at night, the pain was getting worse, and I would even find myself dozing off at the wheel. Still, there were no answers.

In late 2007, I was remarried, moved back to Ohio and became pregnant with my now eighteen month old. Then, the most usual thing happened while I was pregnant – I wasn’t sick any more. The physical pain I had felt for years had miraculously disappeared and for the first time in my entire life, I did not feel sick. I questioned my OB several times about it, but she told me to let go. My little one was born in early September of 2008, and a few days after giving birth, I awoke to the inability to move and the worst pain imaginable. My hands were curled up into fists and I could not pry them apart. My body was swelled and I felt like I weighed 500 pounds. After a couple days, I knew I was not getting better and went in to my family doctor. I really believed she would tell me it was some kind of postpartum infection, and that antibiotics would cure me. She ordered several tests and told me to take Aleve or Advil for the pain and swelling. Within a few days, she had a diagnosis, rheumatoid arthritis.

I knew nothing about this new “death sentence” that I had just been handed and internet made the disease look like something that end my life within five years. I picked up the phone and called my sister and told her that I needed her. She came to stay with me with the baby was about two weeks old to about the time he was two and half months. If not for her, I am not sure how I could have taken care of a newborn when I could barely hold a fork.

A lot has changed since I received my diagnosis. First, that was probably the worst flare up I ever had in the last ten years, and second, I chose to educate myself to a point where I have accepted RA in my life, not because I wanted to, but because I had to. A couple months later, after a visit to the rheumatologist, I was also diagnosed with fibromyalgia and the blurry vision of what was my life started to paint a clearer picture.

I think, if anything, the ten years of trying to find answers prepared me for the day that I would accept rheumatoid arthritis and fibromyalgia in my life. It wasn’t easy, but once I got past the fact that it wasn’t all about me, and that the world simply didn’t stop because I was sick, I let go of the frustration. There are times where it can be difficult but a reminder that my mother raised me to be “tough” turns into a big ol’ kick in the pants.

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5 thoughts on “Frustration

  1. Wow. The more I read, the more I learn about you and what you have been through. You are a STRONG woman. Don't let anyone tell you different. I'm glad that you kept pushing to find out what was wrong. It's frustrating to be told you're "fine" when your body knows otherwise!

  2. Wow, you certainly are a very strong woman…you've obviously been through a lot. Your story reminded me of that some of those stories you hear on Mystery Diagnosis show on TLC. People go for years living in pain, with doctors telling them nothing is wrong. But you know your body best and I'm glad a dr finally listened to you.

  3. I can't imagine going through all of the things you have on top of having multiple autoimmune diseases..that is the meaning of 'tough' to me.I keep wondering about doctors and how much they say stress affects our disease.When I was in the ER for my IBS the first thing that was brought up was the stress from my surgery. While I agree a stressful situation can trigger a bout or flare of the disease, sometimes I think it's just easier to blame it on stress then it is to really find the reason something is happening. Personally, I think the 'it's stress' diagnosis is a cop out.I'm glad that you finally got a diagnosis (though it probably wasn't what you wanted to hear.) I had a very similar situation while pregnant and have lost substantial ground after giving birth, in fact my health has been in a perpetual free fall since.I often wonder why they can't use pregnancy hormones to help women with RA…I know how difficult it is to have a medical professional tell you it's all in your head, I can just imagine how horrible it is to have a family member use that kind of information against you…so just in case you missed it the first time. Not defective..totally TOUGH!

  4. U have tremendous mental strength Lana….it takes hell lot of courage to overcome such turmoils….u have truly inspired me to keep going no matter how hard the situations are….thanks so much….God Bless!

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