Saturday, April 27, 2013

RSD INTERVIEW #50 - WITH WENDY SWIFT


HOW AND WHEN DID YOU GET RSD?
On November 22, 2010, I had ACL reconstructive surgery from a torn ACL and two fractures, and I developed RSD immediately following surgery.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I was very active. I worked out, I worked two jobs and volunteered at church, on top of being a wife and a mother. Now I am in bed about eighteen hours a day. I can walk but I use a wheelchair the majority of the day. I have lost family and friends, and felt the emotional burn from RSD.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, my husband and two daughters. I do receive outside help occasionally.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Without my faith, I would not be able to survive this disease. I went through a very dark period where I thought that God had abandoned me, and was punishing me. I was suicidal and wanted to give up many times. But He has seen me through that dark time and, incredibly, I have been able to find peace in this disease and have the will to carry on. Without my faith, I would not be here today.

HOW HAVE YOU REINVENTED YOURSELF?
I used to be very impatient. Now, I am more patient. I used to have the need to be in control of everything, I now realize I have no control over any of this and am now accepting of that fact. I feel I am a more peaceful person at this time in my life. I can finally sit still, and not by choice.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, I am closer to God. It has, also, given me and my family a deeper level of compassion for one another.

WHAT THINGS DO YOU MISS THE MOST?
Getting on my knees and praying every morning,.exercising, and participating in the outside world, in general.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I would want people to know that this disease is very misunderstood and unfairly judged by many. It rips away so much and the constant excruciating pain is exhausting. This is not just chronic pain, it is chronic pain at the very highest level. I would ask them to care more about educating themselves about RSD to have the support and understanding we so desperately need.

Friday, April 26, 2013

RSD INTERVIEW #48 - WITH MARIANNE ELDER


HOW AND WHEN DID YOU GET RSD?
Six years ago, I got RSD. I went outside to cut my roses. The sun was going down and my mother was helping me cut 27 rose bushes and, when I turned the curve to cut the last rose bush, my left ankle rolled on the outside of the curve and it rolled and it snapped in half. As soon as I heard it break, all at the same time, I collapsed with a lot of pain. My mother helped me into the house and we called my husband from work and told him to take me to the hospital.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I no longer could get up and move around anymore. My leg was turning purple, blue and red, and it was burning like there was a dagger stuck in it. I was even using a walker for five years. My husband had to do everything for me. My children were helping me out, as well, and my youngest son was very, young when I got injured. I no longer could get around like I used to. When I make plans, I can’t always keep them like I used to. As time went by, I noticed things were changing. I could no longer drink my coffee at a standard. 176°. I had to have it at 135°. I could no longer eat ice cream and I could no longer have cold IVs in my arm or any ice on me at all because it felt like fire. I always have to elevate my feet on a stack of pillows and, when sleeping, I have to have body pillows all around me to prop my arms and legs up. Anything that touches me feels very cold, yet, it feels like I’m on fire.

I’ve been in remission for two years, which was such a blessing. However, the remission recently ended and life has become harder again.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, my husband, my kids and my friends help me. I have even had a house keeper.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I am a true Christian. I believe that Jesus has a part in all of this and I do believe that Jesus is getting me through all of this every single day.

HOW HAVE YOU REINVENTED YOURSELF.?
If I did not have Jane, I would struggle more with this disease. She has taught me a lot about it and how to get through it. Below are some ways I am changing:

1. When I make plans with my husband and kids, things can change in the blink of an eye and we will have to go home.

2. I was on narcotics for pain for five years and I have been free of them for two years now.

3. I am now looking for ways to help me homeopathically, rather than using prescription drugs..

4. I try to be patient, but it’s hard having people help me and it’s hard having patience when people do things differently than I do.

5. Now that I get judged by the way I look, I no longer judge other people according to the way they look.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I would say yes, something good has come out of this. I trust in Jesus more. I have more patience with my children and my husband, and they have more patience with me.

WHAT THINGS DO YOU MISS THE MOST?
There is a lot that I miss. I miss being able to make plans and stick with them. I miss being able to eat ice cream anytime I want. I miss being able to get up and move around and clean my house and take care of my kids like I used to. I miss doing things on my own.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want the general public to know “do not judge the book by it's cover”. I am in pain a lot of the time and most of the time I don’t show that I'm in pain. I want the hospitals to be very well equipped by knowing about RSD. I need the nurses to know about RSD, as I have run into more nurses that do not know what RSD is.

WHAT HAVE I LEARNED ABOUT THIS DISEASE?
I have learned that RSD truly can bring you down and you have to fight like hell to come back up.


Tuesday, April 23, 2013

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 dont 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. Dont 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 dont know who I am. My past life has been taken from me and everything is gone. CRPS has changed me into someone I dont 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 dont 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.

I suppose the best way I can have someone come close to understanding a portion of what we CRPSers 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? 
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 brothers 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.

Monday, April 22, 2013

RSD Interview #47 - With Christine Beausoleil


HOW AND WHEN DID YOU GET RSD?
I was injured at work on April 29, 1999 when I struck my right knee on a counter support (hard). The whole unit heard it. After three days of no improvement, I requested medical attention. X-rays were done and they found a tumor encapsulated in the fibular head (an incidental finding, having nothing to do with the injury, I didn’t have any symptoms from the tumor).
On March 5th, 2002, I was re-injured at work, this time taking my chance of working away from me. There have been multiple surgeries and I also broke my knee, simply by standing on it. Ultimately, I received a letter from my employer, firing me for not being able to perform my duties!! What a slap in the face! It was totally legal, as Florida is a "work at will" state, and you can be fired for absolutely nothing.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My passion, other than my girls, was to be a nurse-from the time I could talk. I can no longer work as a nurse, or anything, because of the symptoms of the disease and the side effects of the medications that I need to take. Friends don’t understand. Most have drifted away, leaving me alone and out of the loop. Now I only go out for medical appointments, testing, etc. I’ve missed weddings, funerals, family gatherings, etc., due to flares, no wheelchair access, and hospitalizations.

Because I can’t work, my income has been lowered significantly, affecting how I pay bills, take care of my girls' gifts for Christmas and birthdays, college, etc. My Mom moved into my basement to be my daytime caregiver, as well as taking care of my girls (mostly, driving us everywhere).

DO YOU HAVE A GOOD SUPPORT SYSTEM?
My Mom and girls have been great. The girls were only four and six when I was first injured. The “me” now is the only one my youngest remembers. Kaitlyn, at the age of four, packed her toys and stuffed animals, took her pillow and stood by my front door, waiting for someone to come get her because I “wasn’t fun anymore”! She hates this story...now, it’s funny; then, not so much. Kaitlyn and Meaghan, both, stayed home instead of going away to college, so they could “take care” of me. I’ve had a hard time with Paul. He has been very immature and selfish during this time. It’s taken many arguments and counseling to have him realize what he’s done to the family. Things with him are coming around.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Until two years ago, I was going to Mass weekly. It became almost impossible to get me out of the house in the wheelchair (and back in), as well as causing increased pain by doing so. Even with the ramp we put in, I don’t go out unless it’s medical. Locally, Mass is on TV six days a week and, if I’m awake, I’m watching it.
Sleeping problems make everything difficult. I tend to be awake all night long, and sleep during the day. During the week, the girls are in school, so I don’t feel guilty about sleeping.
My Mom tries taking me out after my appointments (doing anything from eating to shopping), usually without much luck. I just don’t have it in me - too tired or in pain. She pushes, sometimes giving me no choice; telling me her sugar is too low and she needs to eat ASAP, she has to pick up something at a store, pay a bill, you name it. She’s good!

HOW HAVE YOU REINVENTED YOURSELF?
Up until a couple of years ago, I would crochet & do crafts for people. My hands became a problem, but I was able to teach the girls some of my stuff and how I cook (usually, with no recipes). My youngest really took to cooking. It’s very calming.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I was able to be at home with my girls after school instead of them having to go to daycare. It was nice to be there to help with homework and cook good/healthy meals for them. Our house became “the house” to go to for sleep-overs and such, especially, after we put the pool in. I figured it would help out with my physical therapy. I loved teaching the girls to swim, too. I learned fairly early. I wanted them to be confident around the water.

WHAT THINGS DO YOU MISS THE MOST?
I miss working, as sad as that is. I’d wanted to be a nurse from the time I was about five. I had to put myself through school because my parents didn’t have the money to do so. I’ve worked in hospitals, doctors’ offices, and even a county jail (which was pretty cool). I considered teaching to be a big part of nursing. If the patient understood why they were sick or had to be on a certain type of diet, they could stay healthier and would need less visits/calls to the office or hospital. In one office, I would do group teaching about different conditions that patients and families could attend. Some of the battles patients have are with family telling them “you can eat this!”, “just one drink won’t hurt you”, etc. Sometimes helping one person directly helps a whole family indirectly.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
RSD can’t be “caught". The rashes, discolorations, etc., won’t rub off on you. You may not see the areas that are painful, so PLEASE ask before touching us!! My Mom still rubs against me, either with her body or clothing (she has just recently grabbed my arm). Family and friends have to understand that we don’t want to cancel plans, but sometimes our bodies just can’t deal with being up and out. Between the conditions, meds, and treatments, our body can only deal with so much. Don’t take it personally. Something I've said from day one. I've never asked "why me?". I always said better me, a nurse, to have this than someone who can get lost in the system (doctors, testing, meds, therapy, etc). I knew where to start, who to see, which drugs to ask to try. Others may not, and may even believe the crap of "there's nothing wrong, it's all in your head". My personality is one that I push the docs and don't just sit by and wait. If the doc isn't up to par, he's gone.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
Most of us with RSD/CRPS also have other conditions as well, like Fibromyalgia, Arthritis, Osteoporosis. As much as we would like to go out shopping, to lunch, etc., we just can’t. The medical problems and meds can cause stomach problems, so being out can cause unforeseen problems.
If you want to “do something”, cook something we can reheat when we aren’t feeling well, or offer to do our food shopping, maybe even vacuum. Doing things that take a lot out of us would help us the most.
If you want to really know how we feel, ask, and listen (really listen) to what we say. Nothing can be worse than those who tell me that I have NO idea what pain is, yet, because I’m too young! If you see someone who doesn’t look “disabled” because they can stand or are young, don’t judge right away. You may see us literally dragging ourselves back to the car five minutes later. Remember that not all cancer patients are bald, not everyone in pain is crying out.
I have used smiling, laughing, just “happiness”, as a coping mechanism when I’m out and not feeling well. My family is surely tired of hearing that I’m not feeling well. The “act” gives them hope that I’ll have more good days than I currently have. Mom doesn’t even know when I’m doing it. The happiness sometimes helps improve my mood and makes me truly feel better. It’s always good to try before going anywhere. It can get me through things I’m dreading, like doctor appointments or testing.
Meditation can help with this, too. I’ve used that for years but, when flares start, it’s better to try to sleep through as much as possible. 

The Darkest Night by Wendy Swift


The Darkest Night

How is it - that life can be
so cruel and harsh, yet still set us free?
Reaching and grasping for the beauty within,
hoping and praying this nightmare will end.
The pain takes over your body, spirit and mind.
When do I get off of this endless ride?
All I can do is just hope and pray,
trusting that Jesus will come save the day.
I have prayed for death so many times.
Thinking it's better than life, this prison of mine.
Discrimination comes in every form,
people just don't accept if you’re not the norm.
I now understand that this is God’s way,
of weeding out the ones who weren't real and got in the way.
It was hard to find peace in this torturous time.
But suffering comes with blessings behind.
I often wonder what lies ahead,
when is he coming, my means to an end?
Jesus the way, truth and the life.
The only way to see light in the darkest of night.

Copyright Wendy Swift


Sunday, April 21, 2013

RSD Interview #46 - With Denis Stafford



HOW AND WHEN DID YOU GET RSD?
I am a Glazier Trade Man. I was working on an entrance in Carlton Place, Ontario. At 5 to 3, my partner and I fell around 7' to the uneven ground. I broke four metatarsals and my big toe on June 26, 2007.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I haven't worked since, and the CRPS has gotten worse. It went bilateral 2½ years ago. Not as bad in the left leg. Thank God. On the top of my right foot, I developed an ulcer 1½ years ago.Then another beside the one already there. It just kept getting worse till I couldn't handle it, anymore. I had my right leg amputated Feb. 20, 2013. I know it isn't a good idea. My doc talked a long time before I made my decision. It was either that or something worse was going to happen. I could not take it anymore!

DO YOU HAVE A GOOD SUPPORT SYSTEM?
My family and friends, and the people on a few RSD/CRPS sites.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
It does very much.

HOW HAVE YOU REINVENTED YOURSELF?
I haven't.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
No.

WHAT THINGS DO YOU MISS THE MOST?
It might sound crazy to some but I miss working so bad (and the ability to walk). I haven't walked on my right leg since the accident.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
*That it is very hard to diagnose.
*That the doctors need to be educated about it.
*That the pain is just unbearable, at times.

I would not wish this on my worst enemy!! That's how bad it is. Get the doctors educated about this disease, PLEASE!


Monday, April 8, 2013

RSD Interview with Anita Rhoades Henslee


HOW AND WHEN DID YOU GET RSD?
My daughter got RSD in 1987, at age 9, when she knocked an iron off a tall shelf onto her right ankle. My son got RSD in 2000, at age 13, when injured in his right ankle during athletic training. I got RSD in 1995, when I had a car accident and my right ankle was dislocated and torn to the bone.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It was a nightmare with my children because of the helplessness I felt when they were in pain, and I could do so little to help them. I first ignored what I knew was RSD with me because I was taking care of my son, and I wouldn’t admit that I had RSD.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
The main support system I have is online support groups. My husband does take care of my basic needs when I am unable to do so.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I rely on it to calm me down when I feel overwhelmed, and I try to stay grateful to Him for what He has given me. When my son, who had RSD, died at 18 yrs of age, I relied heavily on my faith to get me through, and still do.Though (technically) my son died in an auto accident, I believe (from witness accounts), that he had a seizure, since he had those occasionally after being diagnosed with RSD. The toxocology report showed no drugs or alcohol in his system. I believe RSD did kill him, just indirectly, and it is not on the death certificate.
The only comfort I can feel in my tremendous grief is knowing he is in Heaven where he is no longer in pain.

HOW HAVE YOU REINVENTED YOURSELF?
When my daughter was diagnosed with RSD, I found out how to be a real advocate for good medical care. That was not easy at that time, when even less was known about RSD. It has helped me to be more assertive in that area for other family members, friends, and myself. I have had to accept not being able to work. Accepting that I was disabled was humiliating and depressing. I have had to find other ways to feel useful, like helping those with RSD and grieving parents. My daughter has been in remission for 22 years, and I spread the word to give hope to others with RSD.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
As a parent seeing and hearing your child scream from unrelenting pain, it is hard to see much good. I would say it has made me more compassionate toward others.

WHAT THINGS DO YOU MISS THE MOST?
I miss being able to walk fast, plant a garden, go to any event I choose. I miss being able to work, of course, and the financial freedom that comes with that.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want them to know that RSD/CRPS is real and that more research needs to be done because a lot more people have this than the general public realizes. I want them to know that if someone they know has this, to give them some of their time, like they would someone with a well-known debilitating disease. A phone call or card, or casserole or short visit can mean so much!

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
Even people who have RSD believe that it is not genetic. The truth is, as far as I know, no research has discovered any gene for RSD, therefore not enabling us to know if there could be a genetic factor or not. I know that my family is not the only one with multiple members having RSD. I have talked to other mothers that have RSD and have a son or daughter or two children, like me, with RSD. The medical community needs to become more aware of this.