Originally posted JANUARY 6, 2011
I found your blog last year and have followed your entries regularly. I find your entries witty. I have cardiac sarcoidosis and was diagnosed in 2008. I was told that I would never recover and that cardiac sarcoidosis damage is permanent, my condition would only worsen and I would need a heart transplant in a couple of years. Unlike you, my sarcoidosis is only in the heart. I only have heart failure. You have sarcoidosis in the lungs and heart, heart failure and pulmonary hypertension, plus a leaking PFO. How the hell can you get better? I spoke to my doctor about you and he said that you are either making this crap up or you are a miracle. He said someone with all that you have should be incapacitated. You are definitely an inspiration, and I hope I could improve my heart function and reverse the damage like you have done. Please, help me. Let me know what you did!
Thanks for your email. Where do I begin to answer your question? I fully understand your physician’s apprehension as I have five specialists that are completely baffled by my case. Your physician is correct that, according to my doctors, someone with my combination of conditions should not be up and around and as active as I am. I should need a heart transplant. I can’t tell you that I did anything miraculous to get better. Please understand, I am not “cured”. My condition has improved, and that is what is baffling to the doctors. Yes, I too was told that heart failure from cardiac sarcoidosis is irreversible and that the condition only gets worse. The one thing I think that has helped me is faith. My faith is in a higher power and in myself.
I never take a doctor’s word as the one and only thing. I do not put all my faith in doctors. No one can “heal” you unless you want to be healed. And only you can heal yourself. You can follow the regimens exactly as prescribed, but unless you are true to your self that you will get better, nothing will really work for you.
I also do a lot of research. You never know too much about what you have. I subscribe to blogs and sites for more information about my illnesses. I learn something new everyday. I also use a lot of alternative therapies. Try different modalities and see what works for you.
Another thing that people do is complain to everybody they meet. I have always kept my illness contained. Only my immediate family and a very few select friends know what is going on with me. I am a firm believer in energy. I think that the more you talk and share your “troubles” with everybody, the more energy you give to your illness. You are feeding it. I know that I have different afflictions, but I do not ponder them or go about looking for support from every person I meet. A lot of times, instead of getting supportive energy from people, they start to think that you are going to die, especially if they do not understand the illness you have. All that “poor guy! He’s gonna die” energy is negative and does no one any good. Unless you know you are going to get supportive energy rather than sympathy, keep it to yourself. There is a big difference between sympathy and support. Just remember that support is positive, sympathy is negative.
Even when I have my worst days, and anyone would ask me how I was doing, I would say “fine”. That way I was telling my body that I am fine. Saying you feel like shit to everybody just feeds the illness, and confirms that you are feeling like shit. Tell your body that you are feeling like crap and it would. Tell your body that you are feeling great, and despite the pain and tiredness, the positive attitude might just make you feel better. It worked for me. And saying out loud “I feel great” and thinking “I feel like crap” does nothing for you either. The positive energy has to come from your core, your self, your soul.
I also can’t take all the credit. I have an incredible wife, partner, friend. She makes sure I am in check when I seem to falling off the take care of yourself wagon. She is truly incredible and I would not be alive today if it were not for her love and support.
Don’t misunderstand me. My condition is improved. I am not cured. My heart is still in failure. I still have episodes of Vtach and my defibrillator has to kick in to bring back the heart beat to normal. Thankfully I have not had a shock as yet, and hope never to have one. But I am blessed to have that mini generator in my chest waiting for the day that something does happen. My oxygen saturation still drops by as much as 25 percentage points when I move around. I have to be on oxygen therapy when I exercise. So no, I am far from cured. But I am far from dead.
Keep a positive attitude. Feel your body. Learn your body. Your body will tell you what is working and what is not. Trust yourself and your intuition. Listen to your heart.
All the best