Living with RSD - Not making my life about RSD

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.

This photo shows the swelling and discoloring and swelling in right hand 2 hours after Spasm ended.  RSD attack lasted from 7:30pm till Midnight.

 

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Entertainment Earth

 

Comments

Phoenix's picture

I know a lot of the times when we're out, you usually end up hiding behind someone if the wind is blowing. There were also times you were wearing your heaviest coat in the middle of summer, to help protect against the wind. I've also seen simple things like a slight tap on your arm send you into tears. 

One time we were out driving down the road and I hit a pothole. You had been doing great the entire day without significant swelling and a manageable pain level. But after hitting that pothole, your hand swelled dramatically and you could barely move. I offered to head home, but you wanted to keep on with our plans. You ended up taking one of your strongest pills just so you could function a couple of days later.

I definitely do feel helpless when you go into your spasms. It becomes a rush to find the pain pills and a blanket for you to help as quickly as possible, then it changes into a waiting game to see how long it will be before you can move.   And it seems now that they are worse. :(

 

Michele Ivey's picture

I am so Thankful for your friendship and how much you've done for me, Phoenix.  Outside of my family, you have seen the most of how RSD has changed my life.  You've welcomed me into your place when it's too cold in Michigan for me.  You've been by my side many times when I've been down, before and after my surgery.   And you're always going out of your way to avoid things that hurt me, parking close to entrances and avoiding potholes and entrances that would hurt me.   



I remember many times on your couch with heaters turned on, heated blankets wrapped around me.  Waiting just so I can talk and move again.  I know it's a lot to watch, not just being the one in pain, but to be the support.  It's a heavy burden, which I can never express the right amount of Thanks to those who take it on to be there for me.  You've taken care of me while I'm in pain, and been an ear for me when I'm emotionally torn by this life.  



Thank you!  Thank you for everything!

Sewer Scourge's picture

Human suffering has to be the one thing that pains me the absolute most to watch; especially when I'm powerless to do anything about it. Michele Ivey is somebody I've looked forward to meeting for many years, and when I finally did, it became very apparent that she isn't well. She's on constant pain, always worried about when and where her next spasm might take place, forever forced into adjusting the most minute details of her life in order to prevent another attack. Reading about it is one thing, but seeing it was another. She came to Hew Jersey, where I had purchased a Medical Massage for her. She's never received one, and I figured it could help; it was worth a shot anyway! Upon meeting up with her for the day, I knew immadiatepy that something was wrong. We met in a comic shop, where the temperature was comfortably cool at the very most (I had to unzip my very light jacket), but she insisted that she felt cold, and that it was triggering her RSD despite her wearing four layers of shirts! Leaving the place was hard because she had to conceal herself from the wind; it would actually hurt the poor woman.  We we tried playing video games; something most people consider a very lazy activity at best. But pressing the buttons tired her one arm out. And then when we arrived at the Therapy Center, she had to fill out her intake form with her left, non-dominant arm! I kindly filled it out for her, but she was in too much pain to use her right hand. It was very hard to watch. Luckily, the massage was able to help, but it was temporary relief at best. Michele's sister, Miki, was worried sick about her the whole day. She has to live with this! She cannot function properly; she can't do a lot of work. The most mundane of tasks are difficult for her because they trigger her condition and cause her pain. I sincerely hope that Michele reaches a warmer climate soon, and that she's able to receive the care that she needs.  It it hurt my heart to see her that way. 

Michele Ivey's picture

It was good hanging out, and I am sorry that my arm acts up so much.  I still try to go about a normal life as much as I can.  Sadly that includes pain pills, umbrillas, and heat.  Thanks for showing me around, I did have fun.  

 The Massage was interesting.  It did loosen up things for a little bit, short lived but nice.  I REALLY loved how much it helped my throat.  My voical cords is a problem all their own, to know there's something that can help them really did cheer me up.  Thank you so much!

I look forward to our next visit, hopefully during warmer weather.  

METALHEAD's picture

  The above sentiment has been synonymous with Michele since I've known her.  Unbeknownst to me upon our first meeting, it wasn't until amidst hanging out later that I would grasp an iota of the statement's significance.    In a more recent situation, we all were attending New York Comic Con 2015, Michele, Fugitoid, Dakota, Alopex and myself housed a ways away from the Convention Center.  Our only means of  getting there was to endure a brisk 15-20 minute walk.  The cold immediately slapped us in the face upon leaving the hotel.  I quickly looked to Michele to see how she was holding up.  It wasn't hard to tell that the cold was effecting her RSD and causing her pain. This was yet one of many examples I've unfortunately witnessed from her as to how afflicting this syndrome can be.  It breaks my heart to see Michele like this.  Nonetheless, with frequent brakes taken, we all made it.     While we were all walking about the Javits, trying to keep our schedule.  Michele would weed through the masses whilst protecting her arm so as to not have a passerby come in to contact with it and initiate pain or even worse, a seizure.  Although, I thankfully haven't seen the worst of these, the ones I have seen look excruciating.  Some have brought her to her knees, frozen as she brings in her arm and shrinks her body down into a defensive position.  She's shaking and her face is riddled with anguish as she tries to mentally and physically ride the attack out, hopefully.   Michele, Fugitoid and I proceeded to scope out the Dealers Room.  Fugitoid and I got stopped by a couple for lengthy chat while Michele waited patiently.  For what seemed like an hour later, we finally parted ways with our new friends when we noticed that Michele had dropped her bags and was crouched down on the floor.  It was as we assumed and Michele was having a seizure.  Someone had touched her arm and she immediately dropped from the pain.     The first time I had seen this happen, I was panicking.  Having not been familiar with RSD, I didn't know how to react and wanted desperately to help my friend.  Thankfully, Michele'd previously informed me that the protocol is to never touch her, give her ventilation, her medication and time.  It should be stressed that there is no set time frame when these attacks happen.  We did just that and proceeded to direct foot traffic around her until she could at least stand up. Again, these were but a few recent incidences.  Throughout the convention, Michele was, as she's always been at these events and in life, the epitome of strength and resilience.  The pain ever present, she consistently makes the best out of her situations at an applicable pace, circumstances given.  She is Mrs. "Never give in!" I only wish I could do more for my friend.  I wish I could do more to help find a cure for RSD.   

Michele Ivey's picture

Thanks Metalhead,  



The walk to the convention center was torture, not a big fan of long walks outside as weather cold and win always hurts me.  I will say that during Toy Fair I did find how easy it is to use the Subway to get too the convention center, that I will be using that route now on instead of bearing the cold/wind outside.  If friends want to walk, I will not stop anyone.  I just gotta do what will make the event easier on the RSD.  Thank you for sticking with me during those hard walks.



I know you were there for both of the attacks I had that weekend at Comic Con.  The one you mentioned was a hard one, because we were no where near a booth that we knew who'd help us.  Even though I was pain, I had to get up and move because of the people asking us to move away from the back of their display wall.  We went to Artist Alley, before getting back up to the booth where I was able to sit down and take my medication.  I'm just glad that was not one of the worse spasms, though it was painful and did last hours.  I was glad it let up some, as  that night was the big dinner with our friends.  



Thanks for all the help you've given at the events and hanging out!  Hopefully some day these attacks will truly get under control.  

I have witnessed my friend Michele's RSD attacks on a number of occasions...even from the day we first met. Seeing the look on her face during these episodes, I surely know that she is in great pain. When these attacks occur, for her, time completely stops. She cannot go on continuing what it is she is doing at the time. Eating, driving, sleeping, even breathing...all of these things that we take for granted each day, Michele cannot always do at her convenience. It absolutely rules every aspect of her life. It must be incredibly frustrating for her. If I were in Michele's position, I would always be anxious, knowing that a task may not always be completed when needed, and being fearful that no one will understand what it is I am experiencing. As I do not have RSD, I truly do not know myself what exactly Michele is experiencing, but from what I could see, it certainly isn't anything to be happy about.  I try so hard to help her in whatever way I'm able to; making her comfortable and trying to make her smile in order to get her mind off of the pain. But I still feel so helpless, knowing that I really cannot take the pain away. I am not asking for anyone to feel sorry for Michele, but to sympathize with her and her condition, and to be patient with her when she goes through her attacks. I am so sad to see her go through this, and hope that somehow she will find full relief in the future. Keep smiling, Michele, and always stay as strong as you are! :-)  

Michele Ivey's picture

I remember when you came up to me I was sitting off by myself, because of the RSD.  As Miki and our friend Slash was taking part in a group photo shoot not too far away.  We had a nice talk and it did help distract me from the pain at the moment.  It was good to have someone come up and talk, and we had so much in common, we were meant to meet that moment.

I want you to know that I've never seen my friends standing around when I'm going through as helpless.  You've helped with making sure I've got my meds, you've helped with blocking wind, you've helped with getting heat to me.  Yes, I realize it's gotta be hard that we can't just take the pain away.  But I am Thankful for everything my friends and family do.  And you're one of those people who've always been there as a great support.  Thank you so much!

It's hard not to smile, when I get to visit with such a fun and happy friend.  I look forward to each of our meet ups.  And I feel safe when we're together, cause I know we have each other's backs the best that we can.  Thank you!