RSD Interview #45 - With Maria Guerra

HOW AND WHEN DID YOU GET RSD? 

I just spent seven years of schooling towards Criminal Justice & Criminology, graduating Magna Cum Laude. I was involved in martial arts. I was sending applications out and just starting to get through the application process. The economy, at that time, was starting to pick up in Michigan. I graduated at the time of the 2010 economic failure, right when Michigan became the FIRST state in the US to go bankrupt. I was still working as a Site Manager at the apartments and also took on a job as a Community Living Instructor. This employment would be ok until something else broke.

I just came home from working a 12 hr shift and I was getting ready to hang letters on apartment doors at midnight. A tire from a “semi” had knocked the mail boxes completely out, and I was notifying everyone that they needed to pick up their mail at the post office the next day. As I was stepping down the steps in front of my apartment, I twisted my ankle and fell to the concrete screaming. I could not get up. The neighbor shouted obscenities at me from his window. I wanted to yell “help”, but I could only scream in pain. My friend heard me and came to my rescue. I went to the ER 24 hrs later and they said I just twisted the ankle. They wrapped it and put me on crutches. The swelling in my ankle felt the size of three footballs, and the pain was so intense that I literally wanted to get a chainsaw and saw the ankle off.

Two months passed and l was still not walking, and was in horrific pain. The doctor sent me for an MRI and, at that point, I still could not get the swelling down. We got the results of the MRI and it read that I had ripped one of the ligaments completely off of my ankle bone. Then the doctor told me that he suspected RSD. I asked him “Will I ever walk again? What does RSD mean?” In the back of my head, I was thinking of all the years I have worked so hard for my degree and of sacrifices that I made. “What is RSD? What does this mean for me?” I asked. Basically, the doctor shrugged his shoulders and walked out of the room. I stood up on my crutches and took a step towards the door and collapsed. The office staff had to call a friend to come pick me up. I had no idea where I was going from here. See, there was one more twist to this problem. I had no insurance and I had to find a specialist that would give treatment without insurance.

I started to call around and no physician would treat me, let alone see me for a consultation. Without insurance, making cash payment was not acceptable. I tried to go back to work on crutches but that did not work well. I could not sue my employer at the apartments because I already knew the stairs were broken and I continued to use them. Also, the apartments are privately owned and attorneys I spoke with hesitated suing a privately owned apartment, citing the inability to collect an award.

Anyway, I spent a few months literally living in a recliner, with my best friend caring for me. At first, I thought he helped me out of guilt. We had been close friends for twenty years and I didn’t want him to help me out of guilt, but I could not help myself and I had nowhere else to turn. I was getting ready to move into my own place but now I couldn’t even do that. I had been living in my best friend's front room and we were working on finishing my apartment for occupancy. Now, here I was with CRPS.

How was I going to ask this man to take care of me? How could I do this? How was I going to allow this? He had his own life to live. Was it fair to ask Neil to do this? I had no insurance; everything was crashing in on me. I had just spent seven years of my life in school to be a cop. Was this all gone? I can NOT WALK! I was in martial arts, and I hurt myself stepping off a stair! I am so confused. What happened? This MAKES NO SENSE!!!! OH, THAT’S RIGHT, I FORGOT: RSD/CRPS!!! Then I started to look online for some help with RSD support, looking for someone to help me with insurance and medical. Better yet, let’s be real. I was at the point of suicide. YES, that is what I said. I was truly desperate and, when I called the RSDSA that day, Jim Broatch saved my life!

I was in so much pain from my ankle, and depression was setting in. I had no home of my own. I lost my apartment and my job. Now, my best friend was helping me out of guilt because he did not fix the stairs! I could see it in his eyes. He thought I was holding him responsible. And, you know what? At first, I think I was. Not anymore, though. That man has gone far and beyond helping me.
Let me share one more thing here that is the pun of it all, you may not know what a Community Living Instructor is. My job was to teach others with disabilities how to live in society. Now I have CRPS and my team of doctors is passing me along because they do not know what to do with me. No one wants to take responsibility. I can’t find anyone to help me with my eyes burning. They even went as far as telling me to talk to my dentist.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE? 

CRPS has turned, twisted, ripped off, and even (gone as far as) thrown away pieces of my life. I think, most of all, it has been a blessing in disguise. This disease has made me stop and re-examine my life. The one thing about any disease is that it does not give you a choice about changing your life; your life will change. The choice comes with what you will do with it. Specific ways it has affected my life:

 Emotional roller coaster—many highs and lows

 Laying on bed sheets--skin sensitivity to many things touching me

 Crutches--mobility constraints

 Vertigo--Car rides have become very difficult for me, at times, as the vibrations from the car ride hurt so bad that I think I might go mad

 Sometimes walking on tile feels like I am walking on glass

 Have to wear gloves for high skin sensitivity / tenderness

 Ask for help for things; I never needed help before CRPS.

 Don’t eat—eating habits changed drastically.

DO YOU HAVE A GOOD SUPPORT SYSTEM? 

I have a good friend, Neil, that supports me. And a few friends on FB support me. My children don’t know much about the disease but, if I need them, they will come and be here for me. I have just started to get united with a Christian Church and involved in a bible study group. I try to help educate people in CRPS Awareness that live in the village where I live. People still call it a village but the place is growing so fast that I really don’t think that we qualify as a village, anymore. I am also involved with online support groups and have developed several good friends over the past year that have helped me through some rough times.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA? 

If it was not for CRPS, I would not be back with the Almighty God. I thank God for this disease because my faith is getting stronger every day because of it. That fall has brought me to our Lord Jesus Christ, our Savior. I guess you can say the CRPS has brought me closer to the Lord, and the Lord has helped me accept the CRPS. God has given me the strength to get through’ the pain of the day many times. I cannot imagine successfully making it through some nights without the love of God. HE is my rock. HE is my strength.

HOW HAVE YOU REINVENTED YOURSELF? 

Jane helped me get to the next step of reinventing myself by encouraging me to answer these questions. I did not want to answer the questions but, all-in-all, the questions were therapeutic. They helped me to understand myself a little better and helped me move ahead and take some baby steps forward. It is hard to reinvent yourself; especially, when everything has been ripped from you and you really have no idea what to do with yourself or where to start.

If Jane was not my friend, I would not have answered the questions. Yet, this was therapeutic for me. I am glad that she helped me move to the next step. The next time a friend asks you if you want to answer some questions, please think about it. Don’t think that I did it right off the bat; I did not. It took me like a month to start, but Jane did not give up easily. She can be persistent and I love her as a very close friend. That is the kind of friend you want on your side. Not the ones that will let you lay on the roadside. Just think about that!

When Jane asked me to answer these questions I had to set them aside, and I cried. I realized it has been fifteen months since my accident and I still don’t know who I am. My past life has been taken from me and everything is gone. CRPS has changed me into someone I don’t recognize. It is not just what am I going to do with this person! What can I do? I am not sure what my limitations are. This disease is unpredictable. I have no stability in my life at this time. That is exactly it. This disease is catastrophic, inside and out!

I am working on reinventing myself and it takes time. It is a very slow process. Well, I just cannot tell you what it does to us, because it changes us completely. We don’t even know who we are anymore, only that we are not who we were. Otherwise, we would not have to reinvent ourselves now, would we? And I would not be answering these questions. I do think everyone should have to go through something at least once in their life, though not necessarily this disease. Then, maybe we would all appreciate life itself, even more.

HAS ANYTHING GOOD COME FROM THIS TRIAL? 

It has brought me to a place of change: to change myself to be a better person within myself, and become one within the universe and humanity.

There are so many things in life we take for granted. Little things are easy to take for granted; such as, picking up a fork, brushing your teeth, taking that step, putting on your pants, watching TV, reading a book, typing, going to the store by yourself, showering without it being a struggle, having your privacy in your bathroom, being able to go see your loved one, or just to pick up that phone to tell them you love them, maybe to get those words out of your mouth, maybe the privacy to be alone.

WHAT THINGS DO YOU MISS THE MOST? 

I miss being able to do multiple tasks and not think twice about it. The best way to describe this is best written & spoken by Christine Miserandino.

http://www.youtube.com/watch?v=jn5IBsm49Rk

I suppose the best way I can have someone come close to understanding a portion of what we CRPSer’s go through is: think of someone you know who has lost their mobility. Then think about having to depend upon others for most everything that you would normally just do. Independence would be the best way to sum up what you would miss the most.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE? 

https://www.facebook.com/InspirationalStoriesForCrpsRsd

I encourage anyone to participate in this project if you are in any way afflicted with CRPS. Those that are not, I encourage educating yourselves about the disease by reading some of these stories.

The general public must learn empathy, compassion, humility. NOTHING is an issue until it strikes you, a loved one, good friend, or family member. We are all members of the human race. That includes all colors, creeds, races, and physical abilities. We are our brother’s keeper and must learn to not only practice it, but live by it. Respect one another and do not judge. We are all created equal with different attributes and weaknesses.

WHAT HAVE I LEARNED FROM THIS DISEASE?

How cold the world has really become. I was surprised to find out how many places are really not equipped to handle handicapped people. I live in a small village with limited businesses of any sort. The local handicapped population is either very small or very sheltered. Businesses, such as restaurants, have very lean handicap facilities. My handicap has caused me to isolate myself even more because the larger cities are thirty minutes away and that was too far for me to sit in a car and ride. Automobile vibrations put me in horrific pain and I would cry the entire ride. I have developed increased empathy for handicapped persons to a degree I never realized I did not have.

Consider educating yourself and your families and pass the word. It’s ok to be afraid because we are, too. We don’t understand all either, but we all can learn together and not one case is the same. Try not to compare us because what works for one may not work for another.