I receive a few emails a day, and some comments on the blog and Facebook. A lot of the comments and emails are supportive and a lot are pleading. Pleading for help with this disease called sarcoidosis.
The thing is, the only way I can help is with emotional support. I can either figuratively hold your hand or slap you up side your head if you need it. But I can’t help. Only you can help you. No one else. I can’t give you a list of the herbs and supplements that help me. Every single one of us is different, and the way the disease has affected us physically is different.
Yes, technically I should be dead and that I am alive is a miracle. The reason is a combination of being married to the best woman in the world, being in the right place at the right time, doctors working together, medications that worked, how I lived before getting sick, how I live now, my state of mind, how I see the world and my faith in something bigger than all of us.
I can’t just supply a list of things to take and say “Here, take these. It worked for me”. That would be irresponsible of me and down right crazy. I am no doctor. I am not an expert on sarcoidosis, heart failure or pulmonary hypertension. All I am an expert on is me, and MY life with sarcoidosis and its resulting conditions. Even that still continues to be a learning process that changes everyday with each new experience, each new pain, each new joy, each new sorrow, each new disappointment and each new enlightenment.
You have to find what works for you. Only you can do that. No one else. You are the one that has to buy the book that lists the side effects of herbs with your medications. You have to take the time to invest in you. Asking for the easy way out only sends you out through the door of uncertainty and fear, and straight into total mayhem.
My medications and conditions are a unique combination, as it is with each of us. Therefore what works for me may not work for you or may just down right hurt you. I wish I had an answer or a miracle pill then I wouldn’t be writing this blog. I would be cured, free from this life of constant pain and uncertainty of the disease.
I may have a brave face here on this blog and in my life, but I am just like every one of you. I am scared. I am uncertain. I am in pain every day of my life. I know what it is to be in pain. I know what it is to be afraid. I know what it is to look at my beautiful wife and wonder, hope, and just wish that I could grow old with her. I know what it is to wake each morning and say thank you for another day on this earth .
And even though I know and experience all these things, at the end of all the pain and fright is hope and positivity. Instead of constantly worrying if I will grow old with the woman I love, I grow old one day at a time with her, and enjoy it for every moment it is. We laugh, we talk and we live in the day.
So, all I can say to all the wonderful people who have written to me to ask for my help is, that was it. That’s all I can offer you. No pill. No herb. No supplement that will take away that fear and desperation you feel in yourself. Only you can change that. You have to breathe through the pain and try to live the life you have with the body you were given. Think of it as driving a car without a windshield. As you go down the highway either you go at 80 and have that wind buffeting your face, drying out your eyes, and stinging your skin, or you can go at a slower pace with that defective car and let the wind caress your face, make your eyes sparkle and tickle your skin. It’s your choice.