I Am Not Invincible

For many years people that have known me have always asked me, “how do you do it?” Friends and students who have taken and continue to take my fitness classes and even my wife, Arielle, were always mystified and awed by my energy level. They were totally perplexed that I could wake up at 5am, teach a fitness class and get home at 11pm after 10-12 hours of running a restaurant only to do it again day in and day out. People would always inquire, they wanted to know if they could have some of whatever it was I was taking.

To everyone’s dismay, I was not on some form of narcotic or 5-hour energy drink. This was who I had always been for the last 13-14 years. Aside from having an underactive thyroid, which I was diagnosed with at the age of 20, I was an all-natural person, functioning on what my body could do. The only medication I had ever really take to help improve my energy level was the synthroid that was prescribed for me. I completely understand that living a life of burning the candle from morning till night is probably not the healthiest choice one could make, but what the hell it was not like I was doing coke or drinking excessively.

Whenever I had down time I was tired and always found myself lying around and or sleeping. I figured it was a by-product of my underactive thyroid and just my intense schedule of fitness classes and restaurant work. As time progressed and I found myself entering my mid-twenties, then my early thirties and finally around 35-36 my body started to catch up with the inevitable. While I could still push myself, my body started to ache, my joints felt stiff and I became less motivated to hit the gym and I was even more tired.

TeachingGlendale4Then one day in the summer of 2014 when I was driving to Santa Monica at 7:30am on a Saturday to teach an early morning cycling class, my right hand went numb. My fingers swelled and it felt as if my hand was the size of a balloon. Freaking out I immediately went to urgent care at Cedars-Sinai that afternoon. The doctor on call told me I had bi-lateral carpel tunnel syndrome. WHAT!? That makes absolutely no sense, as I do not do a job that keeps me at a computer all day typing, nor am I in the service industry doing things like massage therapy. Oh, and in case you did not know, bi-lateral carpel tunnel usually affects pregnant women. In this instance, one thing is certain; I am a man so I am unable to procreate in my own body, so let’s cross this off the list. Later, I saw a neurologist that suggested I get a very painful electrode test to see if I were a candidate for surgery. Once again a big fat NO. Finally, I landed in the Rheumatologist office of Dr. Lillian Szydlo to ensure I did not have Rheumatoid Arthritis or Lupus.

While my antibodies for autoimmune issues (ANA number) came back high, she was confident that I did not have these severe diseases. Instead she diagnosed me with Hoshimotos Thyroiditis, an autoimmune condition that is related to my already diagnosed underactive thyroid. Dr. Szydlo told me I should come back in 3-6 months to follow up. She also briefly mentioned to me that sometimes individuals with one autoimmune condition could also develop others, so she wanted to monitor my progress.

Upon leaving her office, I breathed a sigh of relief. Ok, this is not a big deal as I have been dealing with my thyroid for sometime now. Superman Greg lives on. So I kept going at the same rate. Being a stubborn, macho man and an invincible one at that, I never did follow up with Dr. Szydlo in the prescribed recommend time frame. Instead, I kept on trucking.

Dealing and coping with my fatigue, joint tightness, numbness, and so on were just part of my daily life. That is until about a year ago when I started having issues with my fingers. I kept getting these little sores on the middle finger and pinky of my left hand. Thinking I had an infected cut, I decided to try and home remedy the problem. My thought process: soak the finger, apply Neosporin and other medicated products with Band-Aids, and that would certainly do the trick. However, these supposed fixes did not do a thing to solve the problem. I mean I am a fitness instructor, I have to do push ups and be on my hands when I do burpees. Imagine going down to the floor left hand in a fist, right hand palm flat on the floor to do a push up. What a weird fitness professional right!? The pain was unbearable every time the tip of my finger would come into contact quickly with a surface. While trying to self-fix the problem to no avail, my wife commented constantly on my excessive Band-Aids covering my fingers and hounded me to see a doctor. Reluctantly, I called and made a new appointment with Dr. Szydlo.

By this time, 2 years had passed since my original appointment in her office. Arielle accompanied me to the appointment, but we drove separately. Arielle called me from the car complaining about traffic and I could sense she felt bitter and inconvenienced. So being the nice person I am, and a bit upset I told her to turn around and stay home. She said no, and finally showed up just as I was taken into the examination room. Then the doctor came in, insert music here – dun, dun duuuuuuu.

The doctor asked me a whole barrage of questions, conducted a clinical exam, listened to my heart, touched my abdomen, looked at the white and purple digits on my fingers and toes (oh I forgot to tell you, now I also have Raynaud’s Syndrome), and then finally took a hand magnifying glass to my fingertips. Dr. Szydlo stepped back, had a seat on her chair, my wife sitting on another chair next to me as I was on the exam table and without any uncertainty in her voice said “I am diagnosing you with Limited Systemic Sclerosis.” Me, totally bewildered and caught a glimpse of Arielle, then I turned my attention back to my medical professional. She was upset and angry with me for waiting so long to come back to her office. She proceeded to tell me that my disease is an autoimmune condition in a family called Scleroderma and my diagnosis is the second most serious kind and could be life threatening as it could affect my kidneys, heart and lungs.

At this point my heart sank. The doctor left the room for a moment and all that happened were tears. They streamed from my face and my wife hugged me. All I could say to her is “I don’t want to die, I don’t want to leave you.” In my mind the reality of my mortality rushed to the forefront of my thoughts and there I was saying to myself “I AM NOT INVINCIBLE.”

14 comments

  1. Arielle · July 17, 2017

    Reblogged this on The Girl with Purple Hair and commented:
    My husband Greg has started a blog to share with the world his struggles, successes, and coming to terms being diagnosed with Scleroderma (a rare autoimmune disease).
    I am proud and excited to share his first post with you and hope you will follow both Greg and I in our journeys.
    Happy reading!

    Liked by 1 person

  2. Arielle · July 17, 2017

    So proud of you for taking this step in sharing your story with the world. It is bold and courageous and you make me so very honored to be your wife!

    Liked by 1 person

  3. Meagan · July 17, 2017

    I’m so glad to have the chance to hear about this from you Gregory & to hear about what this means for you exactly, what this diagnosis means. We are all proud of you! And here for you! xx

    Liked by 1 person

    • Greg Cohen · July 17, 2017

      Thank you so much for your kind response Meagan. Keep the look out for other posts to hope to inspire you and many others regardless of what one faces in life.

      Like

  4. spoonfulsofbobbi · July 17, 2017

    Stay strong Greg! Thanks for sharing your story. It’s important for people who tend to overwork themselves to hear!

    Liked by 1 person

  5. Carissa · July 17, 2017

    Very brave of you to share your experience Greg. Randy and I are here for you if you ever need anything.

    Liked by 1 person

    • Greg Cohen · July 17, 2017

      Thanks Carissa. I appreciate your support. Keep on the lookout for new blogs as they are intended to inspire

      Like

  6. It’s very inspirational how driven you are and continue to live such an active lifestyle when some people would just stop and become immobile emotionally.

    Liked by 1 person

    • Greg Cohen · July 17, 2017

      Agreed, you cannot stop no matter what. We should never let anything define us.

      Like

  7. Monica · July 18, 2017

    You’re an inspiration! I just got a blood test to see if my thyroid is alright. Sometimes finding out what’s going on is a scary unknown, but once we know, we can prevail (especially with an awesome wife, like yours!). You are amazing!

    Liked by 1 person

    • Greg Cohen · July 18, 2017

      Thanks Monica for sharing with me. Let me know what happens. The unknown is for sure scary but we can’t live for the “what-ifs.”

      Like

  8. Vero · July 19, 2017

    Hi Greg – Have you ever taken protein shakes or something like this regularly, with the amino acid tryptophan? In some scleroderma-cases they discovered an association between the ingestion of tryptophan and the onset of scleroderma: http://www.nejm.org/doi/full/10.1056/NEJM199003293221302#t=art
    Generally, I highly recommend to search for the causes / triggers of your illness – THIS IS NEGLECTED BY THE MAINSTREAM MEDICAL SYSTEM allover the world. Causes can be different types of subclinical infections (mycoplasma, lyme, toxoplasmosis, tuberculosis-like infections..), or toxicity: mainly heavy metal toxicity, or chemical agents (trichlorethylene…), silicates. Rheumatologists etc. generally don’t look out for the triggers, they treat you for the symptoms. You should also look out for gut problems (“leaky gut”) – Hashimoto can be a hint that you’ve got gluten or milk protein intolerance. Hugs from Europe, Vero (who is struggling against scleroderma after copper intoxication by erroneously posed copper water pipes, co-infection with toxoplasmosis – before the onset of my illness I had a a very healthy lifestyle with a lot of physical activities) PS: sorry for my english

    Liked by 1 person

  9. Jack Clifford · July 29, 2017

    Please review the book by Henry Scammell called Scleroderma, The Proven Therapy That Could Save Your Life.

    Like

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