Thursday, April 7, 2011

Pain, Swelling and That Sort of Thing: Part 1

"It's probably carpal tunnel." - Me, age 23

Lupus was never even on my radar for what was wrong with me. Why would it be? I had maybe heard the name once in passing and all I knew was, you didn't want it. So when I started having wrist pain, I was sure it was carpal tunnel. Until the pain went further up my arm, then I was sure I had tennis elbow...the immaculate conception of tennis elbow because I didn't play tennis. Once the pain stretched up to my shoulder though, I stopped making predictions, saw a doctor and that's when the real guessing game began.

QUESTION: How many times can you test a person for lyme disease before you concede that is not what they have? ANSWER: 4. In hindsight, the first doctor I saw, we'll call him Dr. Numbnuts, a general practitioner whom I really should have asked to produce a medical license, was a moron. You must understand, all through high school and college I worked for doctors and had such a respect for and trust in them. At this time in my life though, I had moved away from home, away from MY doctors and was taking my chances on some quack in Queens, NY. He ordered blood work, x-rays, put me on various pain medications, all to no avail. When he didn't know what else to do with me, and lyme wasn't working out for him,  he referred me to a rheumatologist at North Shore LIJ, a very reputable hospital on Long Island. We'll call him Dr. Killpatient. I thought, wow, I am finally going to get some answers. Very excited to see a REAL doctor, I showed up at his office with very high hopes on a beautiful day and strangely, but happily, feeling a little better. Unfortunately for me, Dr. Killpatient, dressed in standard golf attire, was late for an outing or something and spent maybe a total of 6 minutes discussing my issues. He deduced, barely even examining me, that I had fibromyalgia brought on by the stress of knowing my mother was going through breast cancer. "Try and relax. Oh and keeping taking the pain pills your doctor gave you." As he's ushering me out of his office (and his life) I ask, "what is fybromyalgia?" His answer..."unexplained pain." End of visit.

Totally disillusioned and physically upset, I sat in my car for a long while and thought about what he had said. Fibromyalgia? Maybe. Unexplained pain? Obviously. Stressed about my Mom? Of course, only I learned about my Mom's breast cancer after I was experiencing these symptoms. He's wrong, this "specialist" is wrong and if I thought I was scared before, I was mistaken. Suddenly, I was no longer feeling a little better. Crap.

From there things worsened. Pain, fatigue and swelling was affecting all of my joints all of the time. It was no longer safe for me to go to work in Manhattan, I was a definite target and moved painfully slow. If I sat still for any length of time (maybe a minute), it was excruciating to try and get moving again.  Not to mention what was going on in my head. Knowing that my parents were going through their own hell, I assured them I was feeling better so they wouldn't worry. I'm such a middle child.

Meanwhile, you know what is so NOT sexy? Calling your boyfriend to the bathroom to help you get off the toilet...because you can't. Trust me when I say, I gave everything I had to get up myself...I just couldn't. Following that humiliating experience, I made a desperate phone call to Dr. Numbnuts pleading with him to give me some sort of stronger medication to make this all tolerable. He told me to come in to his office in the morning. Ugh, that meant I had to actually get there and despite having a car, I couldn't manage the stick shift or turn my head at this point. I called a cab and headed out to what would be a very defining moment in my life.

Picture with me if you will...a young girl, just out of college, who put herself through school by working and going to school full time. A girl who was always the designated driver, who rarely drank, smoked a few cigarettes here and there but always said NO to drugs. This eternal "good" girl is terrified that she is dying and is inevitably going to have to tell her parents this news.  She is looking for some compassion, some saving grace from her doctor, if even just to hear "I'm admitting you to the hospital"...but no...this girl heard the following, in a thick... Russian... accent: "I can find nothing wrong with you. I think you just want the drugs. If that is not the case, maybe this is all in your head."

Remember all that respect I had for doctors? In an instant it was gone. To say I was blindsided by those "professional findings" would be like saying a gunshot felt like a wet willie. I had just been verbally abused. I felt embarrassed, ashamed and horrified. Stunned, I sat speechless for a good 15 seconds trying to form into words what every fiber of my being was telling me to say, but grace and poise was begging me not to. Finally, like soda bursting out of a can you didn't know was shaken, I looked Numbnuts in the eyes and with tears welling in mine, said "Fuck you." Without another word spoken by either of us, I hobbled off the table, out of the office, onto the sidewalk and had a breakdown right there on Queens Blvd. I'm not one to cry, but my limit had been reached. A nice old woman stopped, rubbed my arm telling me it would be alright and helped me get a cab. In true NY fashion, the cab driver asked me to produce proof I could pay for the cab ride first, not trusting this wasn't an act to get a free ride. Holy hell, right? Very quickly that sadness and fear turned to rage and disbelief. I was pissed and I'll admit, irrational. Probably a good thing I couldn't move very well or I might be typing this from jail. My Irish was up as they say, and I was determined to live long enough to find out what I had and tell this bastard what a poor excuse for a physician he was. And I did just that, a few years later. Incidentally, I didn't tip that cab driver either.

Looking back I have to laugh (it's what I do), this was my first experience with mind over matter. Only I didn't know it at the time. As the days went on I started feeling better without doing anything differently, except in my thinking. My focus shifted from worry to survival, which was powered by revenge. When the symptoms began to dissipate, I thought for a fleeting moment "Oh. My. God. It was all in my head!" How mortifying that would have been and yet wonderful if it was all fabricated from stress. But it was not all in my head, I was simply coming out of a flare and a few months later the same symptoms returned just before my sister's wedding and I returned home...where they bred doctors who knew what the hell they were doing.


  1. I love the blog, your spirit and strength shine through in your narrations and I am so sorry you had to go through those experiences before finding someone you could trust to help you, I am just glad you did. You truly are a talented beautiful inspirational person and I look forward to your future posts. Uh i also don't think you give yourself enough credit, your pretty funny girl! Your relating some heavy and scary experiences but i am laughing and crying at the same time. hmmm do i see a book tour in your future? Much love, coco.

  2. xoxo It feels good to let go of all of this. I'm sure my story is not unlike many others and that's why I wanted to write about it. Even tough cookies have their breaking points and I just want to give someone just starting their journey hope that you can go through hell and come out laughing. Thank you for reading and ego boost. Love ya!

  3. Kat... the blogs are great! I can enjoy them since I know you are healthy now, and over a huge hurdle. You have a heart breaking story, but love your outlook on life and all that you have been through. I am looking forward to the next one, and of course, the book tour! ;) You are a great writer! Maybe I will see your name in my Kindle one day!

  4. <3 Thanks Jillian! Really enjoying doing this. Part 2 is almost done.

  5. Thanks for posting Kat! As a fellow Lupus sufferer I can definitely relate. It's nice to have a good writer put these experiences down on paper. Keep them coming!

  6. Thank you for reading Janelle, feel good!