I’m no English major or writer so understand I’m just speaking straight from the heart. Some people may think I’m blunt, rude or harsh and that’s OK, I don’t believe in sugar coating things just to make someone feel better. People have to learn to accept the change before they can begin to LIVE!
First off I do have Systemic Mastocytosis I do shock meaning I go into anaphylactic shock. I’ve shocked more than I can remember over the past 11 to 12 years. I was 30 years old when my first symptoms started appearing. I’ve been resuscitated 22 times. I’m an old school ERT so I do know a few things about saving lives. I’ve been shock free now for almost 3 years this coming November 19th will mark the third year. It’s important to me you understand my experience living with this illness.
You may wonder how I know exactly how many times I’ve been revived. My x-wife who is very vindictive because I won custody of my 2 smaller daughters decided one day to call Social Security and tell them I was faking my illness. Social Security decided she may be right. I received a letter stating my disability was going to be refused. I had to go to the local emergency room and speak with the Doctors who have latterly saved my life 22 times and ask them to write me letters of exactly how many times each one has resuscitated me. One Doctor who I owe so much saved my life 11 times his name is Dr. Vaughn. After showing the Social Security Dr. Verstovsek’s letter and the fact I’ve been on chemo for the past 2 years they reversed the termination and continued my disability. The thing that really pisses me off is don’t these people realize how successful I use to be, I would much rather work then sit home for the past 11 years.
Back in 2001 I almost started full blown chemotherapy at M.D. Anderson but I was scared and decided not to go that route. I got divorced met my current wife who I adore named Patty. I was called by Dr. Verstovsek, he wanted to know if I would consider going on his study to help find a cure for SM. He explained how things would work and the necessary steps I would have to under go. I refused the first time, about 5 to 6 months went by and BOOM I almost died that November 19th I was very lucky to survive that attack. I was newly married and scared the holy hell out of my wife. I called Dr. Verstovsek and asked if I could please be allowed to join the study. Dr. Verstovsek is a wonderful man for those of you who have not had the pleasure to meet him. He sincerely cares for his patients. (My mom thinks he is the sexiest man she’s ever met by the way) He has a great staff, one lady in particular named Kay a research nurse for my study is the greatest. (Kay if you read this you owe me haha joking)
I still get some mild cramping in the mornings, some bone pain of course, diarrhea, headache’s, fatigue, very sensitive to fluorescent lights, sun light and to many other things to list. The thing is I could sit home and cry about how horrible my life is whining and crying everyday but honestly ask yourself what good is that going to do?
I’ve learned to except life with SM do I crave a cure you better believe it, do I believe they’ll find a cure in my life time YES. I have 3 beautiful girls who depend on their father so giving up is not an option. You will be depressed for the first few years it took me around 5 years to realize I still have things worth living for.
I forgot to mention how many of my own family members for years thought I was faking this illness even after my near death experiences. People look at me and think I'm a normal healthy looking individual. I've had my Doctors talk to my family members trust me when I tell you people are going to believe what they want regardless how hard you try and convince them. It took my family probably 8 or 9 years before they really comprehended how sick I was, not to mention my taking chemo. Even though it hurts to know people think I'm faking this illness you have to learn to get past that. If you do not it will drag you down, stress you out and make your life miserable.
I guess what I’m trying to stress is don’t give up, enjoy life and stop trying to find more things wrong with you. Be thankful for what you have trust me things could be a lot worse. I had a huge wake up call while visiting M.D. Anderson for my appointment with Dr. Verstovsek. If you have ever been you know what I’m talking about. I was sitting there waiting to be seen when this Mom and child no more than 9 years old sat down beside me throwing up in a trashcan that was undergoing chemo. I had a huge wake up call that day and thought about how good I had it.
The next time I came back to M.D. Anderson I brought my daughters with me, I called ahead and received permission to play for the patients. So even though I was coming for bone marrows and my exam I decided to put on a show for the patients and family members. My daughter Kalie Layne who is 10 has been singing since she was 6, she has opened for Neal McCoy, Mason Dixon, George Strait’s rodeos along with taking third on Star Search when she was 7 (I have not updated her website in a very long time). It was uplifting to see so many people smiling. It was also a good learning lesson for my girls.
Enjoy life it’s to short to lay around and give up.