Ten years ago I got sick and my whole world went upside down. Never knew what hit me. Lost my successful longterm career, family, money, soulmate, friends and health to FTD. Lost everything a person could lose. There is no recovery from FTD. There are no medications or therapies to slow, stop or reverse it's progression. You will continue to lose your mind till your mind till your dead.
What I did learn is not lay down and die, not be depressed, not mope, not feel sorry for myself and never ever give up. Whatever obstacle gets in my way, I will figure out a way to overcome. If I can't overcome it, I let it go. I forgive myself quickly for the actions I can no longer control. I believe everyone has a right to happiness and purpose. Both happiness and purpose don't just show up at your doorstep, but you need to fight for both every moment of every day. I do everything I can to help others with FTD as well as other walks of life get on the same path I'm on.
I also have learned that I've a sense of urgency that drives people crazy. I'm on the clock. That clock is FTD and it's ticking down. I've no time or patience for bullshit or lackluster efforts.
I created a new life and started over making this blog my core and expanding out from here. I've risen to become a successful writer/filmmaker amongst other things. I type and film on a daily basis. On moving day from NYC I was filming while walking up stairs and fell. Both camera and I got broke. Joe Becker, the filmmaker got me a new camera in 2 days. Wish the same could be said for my body.
It's been about 3 months since I fell and injured my right hand. The pain and swelling have gone up and down. I've tried to ignore it but it's reached the point that even shaking ones hand has brought me to the edge of tears. I figured it had to be a broken bone or ligaments. My left hand was a wreck with 6 of 8 bones being broken or dislocated. Have been on and off painkillers for years. Since damaging my right hand, I've been forced to use my left and now it's 24 hrs. of chronic pain.
I know there's a huge stigma about the dreaded painkillers, but they are relief now. I could write an intellectual article on how Vicoden is working pain relief for me with FTD, but no time now. Found a doc and he sent me to an orthopedic surgeon. Dr. Thull was voted one of the "Top Docs" in Phoenix for at least 3 years straight. I already had the mindset that I had a ligament or bone damage and needed surgery. At one point I found myself sometimes not being able to wipe myself with either hand. Chop the fuckers off and give new me hands. I think you get the point.
Dr. Thull had the X-rays and examined both hands. Left hand beyond repair. The right hand with the extreme pain came a shocking diagnosis. Severe Arthritis and a good chance nothing will help. I was in shock. The fall with the camera brought about a condition that was there. Surgery would not help. He told me to try Aleve for 2 weeks and if that didn't work, cortisone shots, but didn't know if that would be successful.
I left in a state of shock and filmed my thoughts and reaction for "Howard's Brain" at a bar with a Diet Coke. I've busted my ass beyond belief to recreate my life and exist with FTD for as long as I can. My life consists of typing and holding the camera. My new career is now over. Now it is painful to type and I can't hold a glass of water in my right hand, never mind the camera. I'm totally devastated. The Universe hates me. Some people that have heard have wrote to me about use Dragon speech to text software. I love typing my expression and emotion. Love the sound and feel of pounding away on my keyboard. Now what the fuck am I going to do? Start a new career in crosswords and puzzles. Maybe I can become a clown.
Tell you what I'm going to do. I'm going to keep on keeping on. I'm not going to increase my painkillers, in fact I'm going to decrease them to there previous level that's helpful but not interfering with my life. I am going to keep blogging but will be cutting back.
My new main focus will be my book, "I'm aware that I'm not aware" each morning 7 days a week. My book I believe will not only help with FTD awareness, but help anyone dealing with a chronic disease. My main focus will be my book, then my support group which helps many including me and the long term project: "Howard's Brain". Am also going to be working on booking speaking engagements. I've applications out now to various groups and Universities. Will soon have a highlight disk to send out. Don't think there's any disease that can ever shut me up.
I might be crippled by pain and movement but I'll find a way to type. I'm in pain right now. I don't give a shit. I'm sorry Mr. Universe. You better come at me with more than FTD, Cancer, Heart Disease and now Arthritis. Anything short of Leprosy with body parts falling off and I'll keep going. In fact, I'm more determined than ever.
Now I'm going to pull an FTD reversal and say thank you God and the Universe for the tools and help you've given me. In the last 2 years I've accomplished more to make a difference in others lives than I could've ever dreamed of.
I was walking in pain for 3 weeks from buying sneakers 2 sizes to small. Thank you for putting that sales guy in front of me who told me I was in pain because my feet were busting out and he replaced them.
Thank you for having Kevin Smiley inspire me by losing 25 pounds with FTD. Up to then it's just docs saying, Yes, those with FTD gain weight from sweets and carbs. I've now gone from 246 pounds in NYC to 211 pounds this morning. Can't figure out how many pounds that is right now, but it's a lot and I'll keep going.
Thank you for giving me a firm diagnosis with my hands. I know what I'm facing and I will not stop any of my work on projects. Might have to shift a bit, but I'll keep going. There's always a way to get things done and I'll find it. I'll walk into that Valley, facing the pain and keep going. Why? Because I am the baddest mother fucker in the Valley.