You Can’t Feel Sorry For Yourself

So there I was on April 3, 2017, hit with some the worst personal news I had ever been given. Sitting in the examination room with tears in my eyes, Arielle hugging me, waiting for the doctor to return, all my energy and fervor for life seemed to leave my body.

It was almost 3 hours before I had to head to Equinox in Downtown Los Angeles to teach a cycling class. I turned to Arielle and said, “I don’t think, I can teach.” My mental and emotional state was so shot that I could not fill the cup of other people. She immediately contacted my Group Fitness Manager and we started to find me a sub to cover the class. Luckily a fellow instructor agreed to do me a solid and teach my cycling class which was completely out of his way and without his cycling shoes.

After the nurse took vile upon vile upon vile of blood from my right arm, Arielle and I were finally finished at my appointment. We proceeded to drive our separate vehicles back home. While in my car, multiple times I fought back tears. I came home, sat down on the couch, and continued to sob—feeling like the world was caving in on me. The doctor had warned me to not read everything I could find on the Internet; but there I was, sitting with my computer, researching this disease called Scleroderma, which I knew absolutely nothing about.

I found the Scleroderma Foundation site and read about all 4 types of the disease and other various facts. I went to WebMD, and a hoard of other sites, as well as chat groups. All I kept focusing on were the negative outcomes that the disease could render upon a person. I read about Pulmonary Hypertension (PAH), Pulmonary Fibrosis, heart and kidney complications, and so on. Arielle and I went to bed that night and all I could do is feel my heart racing uncontrollably, my breath short and shallow. Suddenly, I thought that what I had read was actually happening to my body. I started to think that the disease had taken hold of me and I was succumbing to it. Mind you, these feelings and manifestations were despite earlier in day I had a complete work up: chest X-ray, heart, and lungs—all clear. With tears still in my eyes, my wife at my side telling me to relax, our teeny 6 pound cat Bleuy crawls up onto my chest. I always find it funny that animals instinctively can tell when their so-called parent isn’t feeling well. Plus, it also helps that Bleuy is pretty much human and acts like a cross between that and a dog. She sits outside the bathroom door when I shower. She runs to greet me when I come home, and daily, she walks me out when I leave to teach my morning classes. On this day, when I needed her most, she just knew. She laid down on my chest and purred for the next hour knowing that it was her duty to calm her “daddy” down. Bleuy

The next day, while I was still wallowing in my mortality, Arielle turned to me and said “I know you are scared and upset, but you need to pick a day this week to stop feeling bad and do something about your situation.” Suddenly it hit me, here I am this guy who pushes gym goers, clients, friends and family to be the best version of themselves, to face life challenges head on, conquer them and find greatness, yet I can’t seem to stop feeling sorry for myself when people in the world have it much worse.

It dawned on me that what I was doing was playing the part of a victim by wallowing in the what could happen; when instead I could be a great force to help not only myself fight a battle against my body, but to help others as well. So I decided to take action. I immediately went back to that dark, scary place known as the Internet and did positive research. Instead of looking for every document about the disease, I sought out and contacted support groups and the foundation itself. Every time I shared my situation with someone I started to cry. I shared my tears with wonderful people like Tina, who works in patient support at UCLA. And even though I cried because I was scared, I knew I was doing the right thing. Initially, I was scared to talk to people because I saw it as a sign of weakness within myself. However, instead of feeling weak, I began to feel empowered. After all, how couldn’t I? I was being was met with great compassion, support and resources from Tina and others. Their main objective was to help me with what could be a life-long battle. I was given referrals to additional doctors, support groups in my area, even contact information for other men fighting the battle. And there was good news too—I had reached out to Tina just in time as she informed me about a patient educational day at Cedars-Sinai Hospital. It would be a day where doctors, dentists and nutritionists who generously donated their time would inform patients about aspects of Scleroderma and answer any questions we as patients might have.

My aggressive action did not just stop with my research or attending educational meetings. I started emailing my doctor asking as many questions as I could related to my blood tests, lung tests, 2D Echocardiogram and CT Scan (which, by the way all came back great). Arielle and I discussed diet changes I would need to make and that she would make them with me to ensure I reduced as many inflammatory foods as possible. Then a lightbulb went off in our heads (ding!!!)

For years, my wife and I have struggled to find out what our true calling in life should be. Always disappointed with where we were in life (even though we have a great life), we constantly felt we had a higher calling. We have come to the realization that Scleroderma, while it is not what we would want as a sign, was just that. My diagnosis was a sign to use our passion for health and wellness to uplift and help others fight. We decided to use our ability to motivate and inspire others to rise up, no matter how tired they are, no matter how stiff their joints, no matter what fears they might have and fight to conquer this disease. One such idea that came to our minds was a fundraiser that involved movement. As a result, we are leading our first fundraiser in two weeks on August 5th 2017 at One Down Dog, a yoga studio in Silverlake, CA. Arielle will be teaching and I will be there with volunteers, who in the snap of a finger donated their time to come speak about the disease and meet anyone who wants to know more. If you are local and interested in attending, click here to sign up for the class. Can’t make it, but still want to donate and do your part? Click here to donate to the Scleroderma Foundation of Southern California.

I look at my face, touching and feeling my tightening skin, trying to accept the changes occurring in my body. I do cry sometimes and that’s OK. I am scared about leaving this world and the most important person in my life (Arielle). And naturally, when I cough, I tend to overreact and jump to conclusions but I am trying consciously to not feel bad for myself. Otherwise if you do, you end up losing. And I my friends, am a winner and my purpose is to help others win too.

14 comments

  1. Cristen · July 21, 2017

    Beautiful! Greg, you andi met at Grit Certification a coupme years ago. I was in complete admiration and awe of your ability to connect with people through your voice and personality. Draw strength from all you are and take one day..one hour at a time. I promise you will have good days and horrible days. Know that many MANY people near and far are praying for you and your family to maintain the best you can ..in the moment you are here..be present each second. Holding you in greatest spirit of positivity@

    Liked by 1 person

    • Greg Cohen · July 22, 2017

      Hey Cristen, of course I remember you and thank you for all the kinds comments. Please feel free to follow my blog and share it. Are you still teaching?

      Like

  2. Suzee Markowitz · July 22, 2017

    Greg you are a true inspiration… in sharing your story you are helping yourselves and others…
    Wishing You and Arielle all the best always…
    Xo,
    Suzee Markowitz

    Liked by 1 person

    • Greg Cohen · July 22, 2017

      Thanks so much Suzee, we need to come by the restaurant and see you.

      Like

  3. Alison Blue · July 24, 2017

    You got this…You will learn what your body needs and together with your amazing wife you will keep it at bay. have you looked into a plant based diet. Life changing for so many with auto immune, and other diseases. Check out Kris Carr. xoxoxox

    Liked by 1 person

  4. Sheila · July 28, 2017

    It’s so hard to know what to feel as my scleroderma gets worse with each dr appt. I can’t explain my feelings to my friends, and family, bc I know they will never understand. You described it perfectly! I live in a rural area where it’s not heard of, and I drive 6 hrs to my specialist (which I can’t do often for financial reasons). I feel very alone in this battle, and reading your story has inspired me to keep fighting–on a day I feel very weak–both physically, and emotionally. Thank you so much for your inspiration and sharing your journey!

    Liked by 1 person

    • Greg Cohen · July 28, 2017

      Sheila I can’t imagine how tough it must be for you with your situation. Be confident in knowing you are certainly not alone in this fight. People like me are here for you and that is also why I started my blog. If you need anything or even to chat, feel free to reach out to me at greg@thetightguypractice.com.

      Like

  5. Kandy Kurkcuyan · July 28, 2017

    If you or your wife need help, im here to share my “scleroderma101 information ”
    Hello, great attitude. You are not alone. I was diagnosed back in 1979@age of 11. Im 49 now, happily married and i gave birth too. My husband and my daughter are my supporters 🙏🙏stay strong minded it helps!!

    Liked by 1 person

    • Greg Cohen · July 28, 2017

      Kandy, this is great. I am glad to here that you have been living a full happy life. Thank you, I am always willing to here whatever information people have. Stay tuned.

      Like

  6. Stacy · July 28, 2017

    I look forward to hearing about your journey. I was diagnosed with diffuse systemic scleroderma in February. I savor every day with my husband and children and try not to worry about the future. Really, what good does worry do? I even played on my softball team this summer. So while it’s a life-changing diagnosis, it can help you to be grateful for all the little things and truly blessed by the big things.

    Liked by 1 person

    • Greg Cohen · July 28, 2017

      Stacy that is a great outlook and I love to hear that you are seeing some positives in all of this. I am happy to share my journey with you and anyone else. We all need to be strong and chose our attitude it will make our body stronger as well.

      Like

  7. Jacob Vidal Davila · July 28, 2017

    Thank you for your support! Hang in there, keep up the fight! God bless

    Liked by 1 person

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