In 2004, I was injured at work. This is something I bring up from time to time here on Cowabunga Corner. Though I don’t want to be remembered only as that person who had RSD, when I have so much other stuff that I can focus on which are happier moments. So, I share to help with the awareness of RSD, and then I write happier stories where I don’t always share the pain that happened behind the story. In fact, if I’m on video and start having problems, I turn off the cameras and take a break. It’s all stuff that is edited out as much as I can before the videos are released because the stories are not about me and my pain. Though some people seem to think that because someone still tries to live, without crying all the time about their pain, that they’re not really suffering. So now some stories of how I work around RSD with doing Cowabunga Corner will be posted.
First and most important rule of running Cowabunga Corner, it’s on my own schedule and is done from home. The more I go out, the more I hurt as wind, cold, and even the bumps on the road causes me pain. Before setting up for video reviews, I take pain pills. I have the toys that I want to review set up around me so I don’t have to move around much to switch from one review to the next. The cameras are on tripods and controlled by the remotes, the change of clothes are hidden behind the desk. And filming is only done if swelling is down, I’ve gotten sleep, and I think I can manage to get through it without showing the pain. Filming is done one day, every two weeks usually with multiple videos filmed.
Now events are tricky because I’m out in public. This is hard, and most of the time I can not promise that I will be okay for the event, as there are many witnesses of me going down in pain at conventions. There have been times that the staff has wanted to call 911, because I’m on the ground not able to move. Most people reach for the right arm to pull me up, which hurts me worse since that is the limb that has the RSD in it. I’ve been having these attacks to where I can’t stand since I was injured.
I’ve been through different medications, nerve blocks, and got a spinal cord stimulator all in efforts to help with the pain. The Spinal Cord Stimulator has been the best thing to date. It makes it so when I’m not going through an attack, I can type, write, and shake hands. Though since 2013, the effects of the stimulator have been getting weaker and since early 2015 the pain attacks have been happening more frequently. And with medication changes as of recently, the attacks are getting worse.
So when I write my reviews about conventions, am I going to promote “Oh my god I was in pain during this entire panel” or “Damn, I had an attack that brought me down so bad that I could not get back to my hotel room which was only a short walk, for two hours because I couldn’t stand for more than two minutes at a time”. How about “Well I was enjoying time at New York Comic Con with my friends, but I had an attack, and had to sit back inside a booth hiding from the public for three hours because of nonstop pain, even with painkillers.” Would these be reports of the conventions people want to hear? All the cons would sound the same. So instead, I focus on the events, the guests and the fellow fans that showed up; giving a happy spin, without crying the entire time.
Everyone who hangs out with me is warned of my RSD. If I’m staying at someone’s house, I give them directions on how to help me if an attack happen. First and most important, pain pills. Second, get a warm blanket or something hot around me, as heat helps a lot. Third, make sure no one touches my right arm during the attack. I can’t stand, walk, or move around during an attack so when one happens if I am thankfully already seated, just leave me there. If not, please help me off the floor and to somewhere to sit, using my left side only. During an attack that is so bad I can’t stand, the pain is in my back as well, so be careful of my back. These attacks could be anywhere from 15 minutes to 4 hours or longer. Once an attack happens, I can’t always talk, sometimes it’s hard to breath, so please help keep my head straight up. The breathing problems started with attacks in November 2015. The first group to see me really go through this attack was the crew at Youmacon. No family was there, so they were calling my sister trying to figure out how to handle these attacks.
Members of the Cowabunga Corner have seen these attacks before and know how important it is to keep an eye on me at conventions. Phoenix, Fugitoid, Leatherhead, Tokka and Miki have all been there taking care of me, helping me get out of the public eye when it happens. Guests at the events have also gone out of their way to help me during attacks as well including Scott Williams, Michael Sinterniklaas, Leif Tilden, and Richard Usher. It’s not that I want the people who I admire to see me in this type of pain. I just want to keep living a life.
Now because I don’t always promote my pain, people feel that I am not as bad off as I am. Though if anyone just takes a moment to talk to convention staffers that have seen me at cons, my friends, and family, they would learn quickly how bad it is. Everyone has stories about my RSD and how it makes daily life hard on us. They can also state that I did not want to just sit around and cry to the world about my pain. Though through TMNT-L and Facebook, I have been speaking up more about the pain. I don’t on the Cowabunga Corner’s Facebook page, as I feel that is for stories posted here. And I don’t plan to flood the main website with stories about it either. But I will keep RSD awareness stories coming.
I live in pain 24 hours a day. I have a neck pillow to help sleep. I have dolls and body pillows along my bed to keep me from rolling onto my bad arm, if I can sleep. Though if I can escape for a few hours to share something I enjoy without needing to focus on the pain, it makes me feel that I have a life.
For those out there who live in pain. I hope that you too, don’t let the pain become the main focus of your life. Live, find a dream and try to focus on it. Hold onto the things that make you happy. It’s not easy when you’re always hurting to find happiness so cherish whatever comes your way as long as it’s not hurting yourself or others. If people think depression alone is hard, try depression with full time pain making it hard enough to live, then to be judged all the time by others when you do try to live. My grounding point is mainly my family, friends and TMNT. Focusing on these, sharing stories about these, it helps me with remembering why I want to stay alive.
To those who want to bully the handicap because you don’t see the pain; you see them trying to live, and think that you know better about what’s going on with them than they do, but you do not. I hope that you never learn how it feels to be in our shoes. Pain is not always seen by just looking at a person. So when you see a person in a riding cart at a store that you don’t know and don’t see the pain. Don’t think right away that person is faking, because you will never know what pain they’re going through unless you talk to them! A person walking from their car in a handicap spot, that person has a handicap spot for a reason. You’re not their doctor and have no right to judge them. While YES there are some fakers out there, there are more people who are really going through problems who get judged because of the fake people out there. Keep that in mind when you want to judge a person you don’t know.
I’m leaving this topic open for people who either have stories about having RSD or for people who have questions about RSD. I also invite friends who’ve seen me go through attack to please share your stories about seeing me with RSD. I’ll be happy to share any of my stories, which are normally left out of the reviews. Just remember Cowabunga Corner is remaining an entertainment website, because RSD is not the life I choose, it is just something I have to live with.