Wednesday, June 22, 2016

Looks like I'm in a bit of a pickle

As sweat dripped down the back of my kneecap, I readjusted my gray pencil skirt, sat up straight in my chair, and listened nervously to the Orthopedic surgeon's spiel. Her dark brown eyes were kind, yet her tone of voice was stern. She spoke softly and directly. I watched her lips move and processed phrases like, "your knees are at the end of the road," "irreparable severe grade 3-4 damage," "managing your pain so that you have some quality of life," and the one that perplexed me, "it's time for a reality check." As this woman, an Orthopedic surgeon who I had never met before, reviewed the MRI for both of my knees and delivered a grim prognosis, I began to cry. Dammit. I've been through this countless times before. I practiced this. I spent a week rehearsing my pitch - my plan was always to accept the diagnosis and prognosis with grace and immediately plead my case for a referral to a specialist overseas. Confident and assured, I would convince this surgeon to refer me to the Cartilage Repair Center in Pennsylvania for one last expert opinion. This was my plan. Instead, here I was, reduced to tears, sobbing into my bead necklace that rattled noisily as I shook with tears. I felt defeated. I felt powerless. I felt incredibly hopeless. As she waited quietly for my response, I lifted my head, looked the Orthopedic surgeon in the eyes and responded, "Well, it sounds like I'm in a bit of a pickle."

A bit of a pickle? Are you kidding me? Why those specific words came out of my mouth are beyond me! I'm in a bit of pickle all right!

I'm not sure why the Ortho suggested that I need a "reality check." I am fully aware of my reality. The condition, the disease called Osteochondritis Dissecans has progressed rapidly and it appears as though most of the cartilage in my left knee is diseased. Although the cartilage transplants that I received appear intact, all 3 compartments of the knee are now affected. The right knee is slightly better off with only 2 out of 3 compartments being affected. The hope was to contain the disease to one area, but my cartilage had other plans. Bummer. (Bummer? I did it again. What I mean is F$%&!) In addition, my elbow appears to be showing signs of the disease. I honestly wouldn't care what the MRI showed if I wasn't experiencing so much pain. But I am. Pain is a constant companion - a reminder that my joints are far from normal. Over the past 4 years, 6 knee surgeries and plenty of "in a pickle" tears, I have had brief reprieve from pain. These were awesome days, and even months, where I walked on the beach, swam in the ocean, or even surfed without pain. I never once, during those 4 years, took those moments for granted. I bottled them up and cherished them because deep down I suspected that the pain was likely to return. I sent texts to my mom, "Mom, I feel good today!" Proof that these pain free moments truly existed. And here I am. I now have a "pain crease" - an ugly wrinkle that has developed between my eyes. Evan says that I make a particular face when I'm experiencing pain, and I can see that it's resulting in a permanent mark on my face. Now that I'm aware, I try to smile more frequently to erase that nasty reminder. It saddens me to think that smiling, something that used to be so automatic to me, is now an act that requires conscience effort. I am too young to feel this old (aren't those lyrics from a country song?)
So your'e saying that my Joint Juice isn't gonna fix this?

Now for the positive news. I am so impressed with the health care and insurance coverage that I am receiving in Cayman. Never underestimate the value of an excellent Doctor! I've been lucky enough to receive care from the best of the best since I was diagnosed 4 years ago.  I did some research (AKA: asking around) and found a phenomenal family doctor here on the island. He listens, he asks questions, he's knowledgeable, and most importantly, he "knows" people. Within 2 days of seeing him, I had my MRI. During my MRI, a Radiologist in Europe analyzed my scan in real time. I exited my MRI with my very dismal reports in hand (and high on Ativan. I suffer from MRI anxiety, so sue me). A week later I was crying in the Orthopedic Surgeon's office, pleading my case to be referred to one of the top cartilage specialists in North America. Four days later I received a phone call from my insurance company stating that I would be seeing the Cartilage Specialist in Philadelphia in 2 weeks. Amazing! I am incredibly grateful. Digesting "bad" news is one thing, but sitting on it for months, or even years, with no simple solution in sight is torture. Just to provide you with a comparison, the wait time for a  semi-urgent MRI in Saskatchewan is 4-6 months. Just for the MRI! Never mind the appointment with the Specialist Orthopedic Surgeon, which can take another 3-6 months.  I just think that it is unacceptable and inhumane to make a person in pain wait that long for answers.

So although I am more than a little discouraged (OK. I am PISSED OFF!) and wish that I could return parts of this body for a full refund ($100 for both knees! Anyone? Anyone?), I am grateful that I have a consultation with a professional who researches my rare condition for a living. In the meantime, walking is hard, especially with my hot, clunky knee braces (can you say "heat rash" in tropical summer humidity?), and am encouraged to use the water as my gym to maintain muscle mass. Thankfully I'm surrounded by the Caribbean Sea so that shouldn't be a problem.

Hanging with my fur buddies helps 
Drinking Prosecco in my pool really helps.

I always debate sharing serious and personal peeks into my life like this one. I know that people read my blog for a laugh, and I realize that today's post isn't much of a feel-gooder. It's so much easier to hide behind Facebook photos of sunsets and Disney trips (uh, newsflash Kirstie: FB isn't "cool"anymore? Say Wha?!) We're all the same though, aren't we? Each of us is fighting our own battles. We're all just trying to do the best we can. Although we might perceive someone as doing "better" than us, that social media smile might mask a health crisis, a loss, a relationship problem, or financial woes. I've learned that being vulnerable and honest strengthens and improves my connections with others. It's those personal connections that make me a happier person - a person who is better equipped to deal with these challenges. This is me - and the sun can't shine everyday in paradise (again with the song lyrics!) Evan hooked me up with a Ted Talk by a woman named Brene Brown. I highly recommend a listen. She explains vulnerability from a research-based perspective. I think she is great. It's changed the way I think. Check it out.

Cheers Friends!


  1. Hang in there buddy... What a bumpy road you're on! I'm so sorry you're in this terrible pain, and I wish I could do something to help. You are such a bright spot in this world, and don't deserve these cards you've been dealt! Love you friend. --Kat

    1. Thanks Kat. It sure helps to have awesome friends cheering me on. Love ya too.

  2. OMG Cousin! I had no idea this was even happening to you. I heard through the Tycholiz/Ewanchyna grapevine just this week.
    I hope that this next referral has some answers for you. Living in pain is just not an option!
    Thinking about you.
    Big hugs xox

    1. Andrea! Great to hear from you…Thank you for your thoughts hugs. I felt them all the way on the island!