Diagnosis:You Are No Longer in Kansas

Thanksgiving dinner, November 2007 was a low point in my life. After being unable to help my mom prepare our Thanksgiving feast because of the swelling I knew something had to change. I could no longer continue to be Super Woman, the time had come to lay down my cape. My body was no longer under my control; this was difficult to accept for the control freak I was (a later blog will describe the hard lesson I learned about giving up control).

After the weekend, I went home and immediately called the office of the rheumy I had seen a few years before.  Here is where my fortune changed, God intervened, and instead of seeing the same rheumy who had sent me away because I didn't have lupus (one of my sister's has lupus) without bothering to check me for any other auto-immune disorder, I was referred to his new associate. Boy am I thankful that he had too many patients (I feel for them because he is not a compassionate doc and you can often hear him yelling in the office at his staff and even sometimes his patients) because the rheumy I ended up with is a "dream."

The day of my appointment I was nervous, you know the kind of nervous where your stomach is in constant turmoil, you feel a little faint, your breathing is shallow. Well I reined in my courage, left the office, took the train one stop from Manhattan back into Brooklyn and bravely walked the two blocks to his office.  Honestly, the entire train ride - all 5 to 7 minutes of it - was spent praying that he was going to tell me that I had something simple; exactly what I had no idea, and I would leave his office with a prescription and in 1-2 weeks everything would be back to normal. Of course I had discounted all of the symptoms I had been dealing with over the last few years, but then again it's easy to convince yourself of something when you really, really want it to be the truth. Also, I had never had an illness, not even chicken pox. I was always so proud of my immune system because while others had colds I would feel crappy for a day and then magically I would be fine. Here's the rub: little did I know that my immune system was actually working against me the entire time not for me.

I rang the bell, was buzzed into the "inner sanctum", looked around and saw nothing but elderly patients.  This only served to reinforce my notion that I would walk out with a prescription and everything would be okay.  The staff were so helpful, I completed the usual medical history forms but was also given a form that asked very specific questions about my symptoms. Questions like: do you wake up stiff?, if so, how long does the stiffness last?, do you have pain in your left wrist?, right wrist?, rate your pain on a scale of 0-20, problems sleeping?, trouble dealing with anxiety, depression?  These questions had me saying "Whoa slow this train down, NOW!" These questions were hitting much too close to home for my sense of comfort.  I began to look around the office again and thought to myself, maybe I do belong here and maybe the solution to my problem won't be so simple. My heart rate once again increased, my stomach started roiling again, my breathing became shallow.  A nurse came into the waiting room and said "Ms. Lovejoy"...oops that's me time to go meet the doc.

Judy, the nurse was so gentle, she took my blood pressure, my weight (ugghh) and went over the medical history again.  The rheumy came in as soon as she finished and when I saw him I thought "wow, he is a nice looking guy." My crazy mind is thinking nice looking doc = good news. As irrational as that sounds, I already told you that it's easy to convince yourself of something when you really, really want it to be the truth.

He introduced himself and when he shook my hand he held on longer than normal and asked to see the other one. After examining both hands he looked at me and said "you have rheumatoid arthritis, I can tell you that just from looking at your hands." My heart sank when I heard arthritis, I don't even think rheumatoid even registered in my mind; probably because I had never heard it before. My mind is rebelling from the word ARTHRITIS!! No way, I am too young to have arthritis (a little naive I know)!!! I cannot express adequately how I mentally recoiled from this diagnosis. He assured me that we would do all the necessary blood work and x-rays but he was quite certain that I had RA. 

He explained to me the disease, how it affects the body, and the treatment options available.  He also told me that there is NO CURE!!! Wait a minute, I had expected to leave with a prescription and to feel better within the week. Stop the world, I want to get off, now!!!!

So, January 4, 2008 became the best day of my life and the worst day of my life...like Dorothy in the Wizard of Oz I was no longer in my comfort zone, the rug had been pulled out from under my feet.

In the Beginning: Pain, Pain, More Pain & Confusion

I don't know about you, but when my RA symptoms first started, I was in constant unexplainable pain and extreme discomfort.  This caused me a lot of confusion.  I was confused because I was the type of person who researched my symptoms (you know, a la Sherlock Holmes), figured out what condition I had, and then made an appointment with whichever specialist was needed - gastroenterologist, podiatrist, dermatologist; I always knew who to call.  Fortunately (but really unfortunately, if a referral was required would I have gotten help sooner?) for me, my medical insurance did not require a referral from my primary care physician.


But, when I plugged all of my symptoms - swelling in both feet, hands, pain deep in the hip sockets, neck, and shoulders - into the various medical websites, none of them gave me a diagnosis (I was so naive). So what did I do? Nothing, absolutely nothing.  I just kept slugging through the days, going to work, running my son to his various appointments and activities. All the while I pushed the pain to the back of my mind and telling myself that I am too young to have so many aches and pains.  I began to convince myself that I was a hypochondriac and so didn't bother to mention any of the symptoms to my primary care. Brillant, right? So for the next 8+ years I struggled with the pain, swollen & tender joints, and the incredible exhaustion.

I have to interject here that I did go see a rheumy during the first year of my symptoms. I heard that stress can trigger underlying diseases and I had been under an incredible amount of stress; my best friend was dying of cancer,I was working everyday, going to the hospital during lunch, and after work taking my son to his activities.

One Saturday morning, a girlfriend and I had plans to take the kids for an outing to an amusement park on Long Island and do a little shopping at this great shoe outlet I had discovered (I am a recovered, actually forced into recovery by RA, shoe fanatic). I woke up early, normal for me, and could barely get out of the bed. My joints were swollen so I popped an Advil. In hindsight, I realize that I was constantly popping Advils or Alleves to the point that I developed acid reflux and had to sleep sitting up. That should have been a wake-up call that the pain was constant. Guess what? I went on the little excursion anyway and boy did I pay for that dumb move.

Sunday morning arrives and my joints are even more swollen than the day before and I also have hives in my scalp, palms of my hands, soles of my feet. My primary doc instructs me to go to the emergency room and get a shot of benadryl. Over the next 3-4 days, the majority of the swelling recedes and the hives completely disappear. Notice that I said the majority but not all and from that point forward I became a recovered show fanatic...