RSD Interview #21 - With Cyndy DeBow Finch

HOW AND WHEN DID YOU GET RSD?
I broke my ankle at work in 2003. I didn't go to the doctor for a couple of days and kept working on it. I was diagnosed in  2005.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It has affected every aspect of my life. I can no longer do the job that I loved, due to the inability to stand that long or carry heavy stuff. I can't run and play with my kids, as I used to. It takes everything I have to get up in the morning, knowing that I am going to have to deal with it all day. I have also lost a great part of my relationship with my husband because I can't do a lot, and have no desire to be intimate because I am too tired or in pain.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
My husband and kids are great. As for the rest of them, they really don't pay much attention to it

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Not really. I am not a big believer.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have learned to adapt and have made myself stronger. I refuse to let this get me down, and won't allow it to take all of me. I refuse to not walk. I will walk until I absolutely can not, anymore.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
My family has learned that I am not as strong as they had thought and that they can help once in a while.

WHAT THINGS DO YOU MISS THE MOST?
Playing and running with my kids. My job that I had for many years, that I loved so much.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That just because we don't look sick, and are not completely broken, we are still in misery everyday/all day.

RSD Interview #20 - With Sandra Worley

HOW AND WHEN DID YOU GET RSD?
In 1999, I noticed a huge lump on my right foot that was the size of a golf ball and it burned like someone was setting me on fire, so I went to a podiatrist and he said it was a neuroma and scheduled surgery. After the surgery things went down hill. My foot began to swell like a football, and the pain was so bad that there were times I wanted to die. The foot just never healed right so, after six weeks, the doctor said “We need to do reconstruction surgery.” So I'm thinking “Ok, he's the doctor; he knows what he is doing,” So, again, I went in for surgery while they cut and broke just about every bone in my foot, and cut the Achilles tendon and stretched it. When I woke up from surgery this time, I can't even describe the pain I felt. I went through 20 casts (because of the swelling) before the doctor realized that a cast couldn't be put on me. So he finally did a half cast, and I was bedridden for a year. When I was sent home from the hospital five days after surgery, the pain was so severe we kept telling the doctor (for months afterwards) and he told my husband I was too sensitive. So we got fed up with my treatment from the doctor because I was getting worse. My husband started looking for another job, and we moved to California. Finally, in 2000, I got my diagnoses from a podiatrist.


IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It has affected my ability to concentrate on things and stay focused, because of the pain. It affects my grand parenting because I can't pick up my grand kids when I'm in pain, and it is so frustrating when you can't explain to them why because they are too small to understand. It has affected my duties as a wife because I can't stand for long periods at a time to cook, so now my husband does most of the cooking. RSD has also caused me to isolate myself from people, because they don't understand what it's like to feel this kind of pain everyday but look ok on the outside. I went from being very independent to having to ask for help, and that has been the hardest thing for me.


DO YOU HAVE A GOOD SUPPORT SYSTEM?
My husband and my mom have been my support system, and a few wonderful people I have met on facebook.


DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, if it wasn't for my faith, I wouldn't have gotten through this for the last 14 years. I won't lie. I have struggled many times, asking God why is this happening to me, but then he shows me there is someone else out there worse off than me. I believe God gives us challenges for a reason, and the one thing I can say is I am a fighter and I will not give up this fight.

HOW HAVE YOU RE-INVENTED YOURSELF?
I love to do scrap booking to take my mind off the pain. Looking through old photos of my grand children and family takes my mind off things. I also love making graphics for other people, like sig tags and cards.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, I have learned patience and compassion for others with disabilities. But, most of all, I am learning to trust more in God.

WHAT THINGS DO YOU MISS THE MOST?
I miss being able to run, I miss a tight hug from my grandkids and, most of all, I miss being able to make plans in advance. Oh, and I really miss my hot showers. I also miss that I use to be a social butterfly and now I rarely talk to anyone, anymore.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND YOUR DISEASE?
I want people to know that, although I look ok on the outside, I feel horrible on the inside. People need to know we have good days and bad days. They also need to know this is not in our heads, and just because we can do something one day doesn't mean we can do it the next. RSD affects our nervous system so badly it wacks everything out, and it affects everyone differently. The public also needs to know this disease is real and it can happen to anyone.

RSD Interview ##19 - With John Mandinec

1. How and when did you get RSD?

When I was 25 years old I was a manager of a Toys R Us Store. I was placing a ten speed bicycle on a stock room shelf. I was about 20 feet up on the ladder I was using. While climbing, I fell backwards while still holding onto the bicycle. While falling, my left arm was holding much of the bike and I tore my left rotator cuff. I hit the stock room floor so hard that many people in the surrounding area said they felt a thud when I hit. Witnesses immediately called 911 assuming that I had a spinal injury. I do recall not having any feeling from the waist down for a brief time. I was taken to the nearest Trauma Center which was at a University Hospital. The doctor treating me was amazed that I did not have any injury to my spine. When the doctor came in to tell me the results of all the x-rays that they had done, he said it in a very soft, but monotone way that “You didn’t break any bones, but one day you may wish you had.” I did not understand it then, what he must have meant by that, but I guess he was right. But I had broken many bones in the past, and they just healed and that was it. How much worse could a torn rotator cuff be, I wondered. After a while of being out of work and getting therapy, but not feeling any better (worse, actually; much worse), I knew something was not right. The pain was so bad, unlike anything I had ever felt before. Why did my skin burn so bad? What was happening to the hair on my arm? Why was it impossible to wear any shirt more than a tank top without it feeling like I was being filleted? My wife couldn’t even touch me without me screaming. The doctors kept giving me more and more pills; the insurance company kept calling me a drug addict.

I had to go to court for Workers Compensation to approve anything the doctors wanted to do to help me. Workers Compensation kept saying “No” to every test or treatment the doctors wanted to do, and then it would be months before I would get a hearing. At the hearing, the lawyer for the insurance company would say “Sorry, Judge, I forgot the paperwork.” Then they would delay it more. At one hearing, the Judge yelled at the lawyer for the insurance company “If you forget again, you will be fined $500.” because he forgot two times in a row. So that delayed things more. I then had surgery on the left shoulder, to remove scar tissue. They had a lot of trouble with the anesthesia. Right after the surgery, I knew something was really wrong, instead of better, as the pain was worse, much worse. Then the parade of other doctors began, from me wanting a second or third opinion, and the insurance company sending me to doctors to prove there was nothing wrong with me. One would say I was a drug seeker, another would say 6 weeks of therapy. Then I was sent to a doctor who specialized in pain medicine. At the time, I was taking Methadone for the pain. It was so unbearable and nothing else took the edge off, or the side effects were horrible. This pain management doctor knew almost immediately what was wrong. She started to explain RSD. It sounded like everything fit. It was odd because, after the fall, I realized that this was no longer going to be the way I could work (using my body, I mean), so I returned to college to get my degree. In my classes for the program I was taking, one of my classmates, a guy who like me was older, he had so many health problems and he was out a lot for his illness. He had RSD. He would talk a lot about it, when he was there. I admit, I thought he was faking at first. It just seemed so unreal. He did help me quite a bit in the time that I was first diagnosed.
After the RSD diagnosis, I was treated by a doctor who was very aggressive with treating my pain. He would make sure that I got whatever I needed to be comfortable. He would say “We have to cut the pain cycle and get this under control”. He gave me injections of a mixture of medicines and herbs into my shoulder, and he did it a few times a week. I was getting to a place where I could tolerate things.

But then I had a tumor on my left foot. An odd type. On the top of my foot, like where it arches, but the top. My family and I took a vacation after I graduated from college and, while we were away, my foot suddenly swelled up so bad I couldn’t tie my shoe. When we returned home, I went to see my regular doctor and they said I chipped the bone in my foot, and it looked like the chip was floating around and would probably need to be removed. My mother worked for a radiologist, so I got an immediate appointment for a bone scan. That’s when they saw it was a tumor. It wasn’t cancer, but this type turned the bone in the area to sponge and, if they left it, I would most likely have lost my foot. At the time, my wife worked with a Physical Therapist who told her that he had a friend who had a tumor that was the same kind, and he lost his leg up to the thigh. I was definitely going to get mine out now. The surgeon that was doing the surgery told me that the odds were high that I would get RSD in that foot (just from the surgery) and, since they had to remove a large chunk of bone from my foot, that would increase the odds.

I did not care; I wanted to keep my foot.

I woke up in the recovery room with that familiar burning. I knew immediately what it was. My recovery from the surgery was really hard. They did have to take a large chunk of the bone from my foot. I had to use a walker to get around. That was hard with a bad left arm. It was like all the progress with my shoulder was now gone. But the same doctor that did so much for my shoulder did the same for my foot. It was a year of meds, more meds, and shots, but I was finally in an almost total remission.

My family and I settled with Workers Compensation, moved to another state and I got a job I loved. One day, after about 3 and ½ years of almost total bliss, I re-injured my RSD arm, but I went to a doctor who started aggressive treatment right away and the RSD did not come back until I came home from work one day, six months later. Apparently, I don’t remember the next six months at all because my wife says that I came home that day, did not even come in the house, but opened the door and said “I am taking the dog for a walk.” She was cooking dinner, she said, when I came back an hour and a half later crying my eyes out because, during the walk, I got lost and couldn’t find my way home. We lived in a condo complex, you really couldn’t get lost. The dog realized something was wrong, and led me home. My wife said that after that my pain was back full force, I was unable to really speak and I couldn’t do anything at all for myself. She had to bathe me, brush my teeth and everything. She took me to doctors and everyone told her I was nuts. They even put me in a psychiatric hospital. They started the whole “he is a drug addict” thing again. Years later, at my Social Security trial, the expert witness that the Judge called explained what happened during the walk. He said the RSD decided to come back and it “short circuited” my brain. I was lucky to get much of what I lost back.

Then I started having serious issues with my heart. I would get a heart rate over 200 beats a minute. I would wake up drenched in sweat; heart racing, pounding, and my chest would feel like there was an elephant on it. My jaw would hurt and there would be a pain down my left arm. It was exactly like what you see when someone on TV is having a heart attack. But I was only 35. Other than what the RSD had done, I was in pretty good health. My wife would take me to the ER and, thinking I was having a heart attack, they would give me morphine injections. The morphine would ease the pain and slow my heart; they had to do these shots every hour when this happened. They would admit me to the hospital and give me an injection or my heart would just keep going hard and fast. My wife said that after a few of these admissions a doctor took her outside and told her I was going to die from pain induced heart damage if I did not get a pump that gave me morphine constantly. She had to fight hard to get me that pump. When I got it, it took a while but things did start to finally calm down.

That first pump was put in about eight years ago and I have had nothing really major since then. They have to be replaced every 5-6 years because of the battery life but, other than a recent mishap where I got the medicine, (instead of the pump) which put me in the ICU for a stay for observation, I have just been dealing with the pain. I have gotten to a place where I know its part of life, for the rest of it. And I do have it now in most of my body. You will almost never see me wearing anything other than nylon shorts and a tank top. But I can take a hug from my wife or kids, without wanting to scream. I had some real bad issues with my legs but, like many with RSD, everything gets pushed to that. Turns out, that my knee was so degenerated that it was causing me problems all over and a recent Synvisc injection fixed up my knee and, in turn, has done wonders all around. My pain level is down. I can’t remember the last time I felt this good, and it's odd because the incident with the pump made them cut back my rate 25%. And I don’t want it to go back up.

2. In what ways has it affected your life?

The answer to this is a book in itself. There are so many changes you couldn’t possibly touch upon them all. So I will just mention a few that stand out in my mind. The first thing I hate to talk about but I feel I have to, if I want to be honest. It’s selfish but I think normal, given the circumstances. After the “shock” wore off, the “why me?” way of thinking started, You don’t realize the amount of bitching, and moaning and moodiness, you project at the very people who have done nothing but stand by your side, fight for your treatment every step of the way, and give you love and support in spite of you not noticing it or showing appreciation. This doesn’t happen because you are a jerk, but because of the “why me, how did this happen?” and shock of it all going through your mind. We aren’t talking weeks in my case either; I am talking years of wearing RSD blinders. Lucky for me my wife's love and support did not cause her to say “goodbye”. She was strong enough to hang in there until I finally saw I was not the same person at all anymore. Like a slap in the face, I saw that I had become more of the disease than a husband and a father.

Obviously, I have been unable to do much of the physical stuff that most fathers do. Being a father of sons, I always wanted to play football and basketball with them. I was very athletic as a young man. My boys just know me really with the physical problems of RSD. I try to make it up to them in other ways. My dad who is 25 years older than me is in better physical shape than me. I hate having a handicapped sticker on my car. I try to not use it, but sometimes I have to. Once, a few years back, I had to use it when I went to the supermarket. I did not need my cane, so I left it in the car, and an older man started to yell at me. He was saying that the spot was meant for “cripples and old folks”. I wished I had my cane, because I wanted to whack him with it, and I am a very easy going guy. But stuff like that, when people are so ignorant, and hurtful, I get mad.

I hate always having to either plan everything, or cancel plans. The financial trouble that it has caused from not being able to work, and the stress it causes, really sucks. But you do the best you can.

3. Do you have a good support system?

My support system is, without a doubt, the only reason I am alive today, and that is no exaggeration, so yes.

.

5. How have you reinvented yourself?

Nothing can bother me anymore, since nothing is or can be as bad as RSD.

6. Has anything good come from this trial?

Yes, somehow it has helped my wife see something in herself she couldn’t see before. She has become more confident and has tried more things and has seen the strength that she has. She has gone to school, she has started hobbies she loves, that she never has even attempted before, and I know it stems from what we have endured as a result of the RSD.

7. What things do you miss the most?

I miss activities with my family and the ability to work, doing what I actually loved to do.

8. What do you want the general public to know about you or your disease?

What I think now is not what I would have said 10 years ago, but I see its importance clearly now. Better support and understanding for those who stay close to us and help us 24/7/365, and love us with RSD. They suffer more because loving someone that is in hellish pain would have to be worse than experiencing the pain first hand. I am not the support group kind of guy. To me, talking about it, that just makes it stay alive. I want to forget it as much as I can. The pain reminds me enough that it is in my life. But I do understand why they are important for people. I think probably mostly when they first begin this whole thing. I remember how there was no place really for us to get information when I first got diagnosed. The internet was not what it was now, and the only place you could really get any information was at a doctor’s office. They don’t have the time and, even now, I see they don’t always know what is really true and what isn’t. Sad to see so many doctors that have that “Huh?" look on their face when you say RSD. I would have hoped that, after all this time I have dealt with it (very close to 18 years now), that would have changed. I am lucky to have a great primary doctor. If he doesn’t know something, he says so. He doesn’t BS me. He either finds out, or sends me to someone who does know.

RSD Interview #18 - With AJ

HOW AND WHEN DID YOU GET RSD?
Hi, Jane, Thanks for taking the time to do this with me: I was originally well. The diagnosis came fairly late; by my doctor, the neurologist, who treats this for me. I got worse with the treatments that are available in my area. It's a complex history. I had a TBI (Traumatic Brain Injury) in 1983 from a  domestic violence situation. I prefer, simply, to say TBI, as it is what it is.
I see the RSD confirmed that there is a lesion. Some patients with them are more likely to get this, I learned later. A more recent surgery (that was not quite optional) did not really succeed but, in some ways, I feel that the life changes that came later, I still wouldn't change much, I suppose.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have a great support system. I had to be creative, but understand: friends can be your family.
Like the title: it can all change (I used to say) in a heartbeat. I like the title of your work: "In the Blink of an Eye", because things do change. Christmas was when I was saved.

HOW HAVE YOU RE-INVENTED YOURSELF?
I love being able to spend time on the phone. I am comfortable with that. I guess email was a nightmare: for a brief time. Clear boundaries helped resolve a lot of it. First with myself. Then others. But few really because, in myself, I let my fear get in the way of very effective treatment for it. And now I can sit still, and learning that the risk can be worth it.
How have I re-invented myself? In just about every way. My approach to managing pain? I am on basic levels there, but creative!. Headaches are prevented (literally), and some had me pretty sick for a good time. I got into habits like the warm, yet darkened rooms. I even use, for example, a colored bulb. I tailor my surroundings for me, and doing that feels great

WHAT THINGS DO YOU MISS THE MOST?
Walking was good-I miss the long walks I formerly was able to take.
My independence, definitely.
Being healthy.
Friends..

WHAT WOULD YOU LIKE TO SEE FROM THE PUBLIC?

-I often wish more people would understood that, when you lose a bit of ground, it can upset you (which is normal) AND, out of the blue, it doesn't take much to wear you out, physically and emotionally.

-I would love to see more knowledge of RSD and how it affects every body system. So many are classifying this as “chronic pain”. "I don't feel that it is STRICTLY a chronic pain disorder. I believe it is more than that (way more complex), and the series of outcomes for myself, even, speak the truth to people.
It is almost as if the attention paid/the focus is on pain, which narrows the scope as to what is treated.  Micromanagement in healthcare is hard to take for some.

-It has no cure, but that right there is no reason to lose hope. Yes, one can even turn out some positive things.

-That RSD is so different, in terms of pain.

-Education is encouraged. Don't be embarrassed to check and see what this is. Brochures are available through doctors and foundations.

-Making the same treatment available to others, for example:  an “RSD friend” who was also diagnosed with Fibromyalgia, can now get the medicine for which she, with RSD, was previously considered “not eligible”. That I find troublesome.

That well, for anyone, and many diseases: a friend diagnosed with another disorder...She may not have what I do but, each day, she understands me better. Talk about a blessing!

What I have learned:
Patience. I simply have to step back and give myself a break, at times. Doing so more often is a great idea.

RSD Interview #17 - With Monique Mayer

HOW AND WHEN DID YOU GET RSD?
I got RSD due to a work injury in 2007.


IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
In many ways!  I was very independent.  I worked and  lived a very comfortable life, with really no fear of struggle.  Now its really hard just to get through the day. Work Compensation hasn't paid or helped with anything.  All expenses came out of our pockets, but the funds and resources are not there for us anymore.  We've max’d out everything.  My injury is to my dominant hand, which spread throughout my body.  I cannot take care of myself like I used to.


DO YOU HAVE A GOOD SUPPORT SYSTEM?
I don't think we have a good support system.  My biggest support is my husband.  Without him, God only knows.
Work Compensation sent me a letter saying they recognized I got my RSD due to my work injury but I would have to apply for disability because they (Work Compensation) are not going to give me lost wages. Well, I can go on and on. I have no support group, or know of one down here, that is for RSD/CRPS.
I now know we have an orange ribbon to represent this condition. I was like in the dark before I started to talk with people in the states. I also went for pain management because they told me I would get the opportunity to meet other people with RSDS but no one showed up (for 6 sessions), only me and my husband. I was very disappointed. In conclusion, I'm going through a big depression because of this condition, and now they’re thinking insomnia, too.


DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, I have faith in God.  There is always the question in the back of my mind “Why me?”,  but I trust in God that this is where he wants me right now.


HOW HAVE YOU RE-INVENTED YOURSELF?
Well, I use the term that I’m rejuvenating my body.


HAS ANYTHING GOOD COME FROM THIS TRIAL?
I listen to my body more.


WHAT THINGS DO YOU MISS THE MOST?
The freedom of living.  It’s winter here, and I cannot put anything on my feet to go outside.  I’ve lost many friends and have come to the conclusion “If you can't accept me at my worst, you don't deserve me at my best.”
At all events and family gatherings, that should be quality times, I seem to want to be alone. I want to be in a very quiet environment all the time, as noise gets to me. Let me put it this way…its sort of like being in a room with so many people, but still feeling alone. My family doesn't understand why I exclude myself from them, but they're not supportive of me, or even visit with me.


WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
For them to not judge me, as they have never walked in my shoes. This can happen to anybody. It wasn't my choice.


*IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
I would just like to be recognized still as a human being. The government and medical staff should look into this condition.  It’s worse than giving birth.  It’s almost like you can't describe the level of pain.  It demoralizes me in many ways.  They say God doesn't give you more than you can handle.  So he must have a lot of confidence in me.  I have enough challenges on a daily basis with this condition.  I shouldn't have to worry how I will pay bills or survive.   I can't even give myself the proper needs.  My body is super sensitive to touch. The last thing I want them to know is that somebody has to really take this health problem seriously, as some people are even being suicidal.
God Bless !

RSD Interview #16 - With Jane Gonzales

HOW AND WHEN DID YOU GET RSD?
MANY years ago, after a bad fall on a concrete driveway. And then crashing into a concrete post in my car a short time later. Though the car accident was the worst, my daughter tells me I was never the same after the fall. There were many injuries over the years, each one leaving me more impaired by not healing properly.


IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
In every way, really. It affected my livelihood, my parenting, grand parenting, social life, driving, etc. I became unable to cook or bake, carry laundry baskets or grocery bags, do housework, sit on low furniture, climb stairs, step onto or over a doorstep with a ridge, travel, etc.
Ultimately, I had to have groceries delivered to my home. I switched from a shower to a sponge bath when I couldn't get into the tub anymore, and I modified my vehicle when I couldn't press on the foot pedals anymore.


DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, I do, but it's dwindled dramatically. I think most people don't know how to deal with such neediness, and many don't want to. Those that leave were not true friends, and those that stay are the unsung heroes.


DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, faith is monumental to me, and God sustains me through everything.


HOW HAVE YOU RE-INVENTED YOURSELF?
I’ve gone from being very private to being an open book, because this disease is too devastating to not speak out for awareness.


HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, all that I've been through has inspired three books, it has taught me gratitude and is teaching me patience.


WHAT THINGS DO YOU MISS THE MOST?
My independence, and visiting my children's homes.


WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That it's real, it's progressive, it's debilitating, and it could happen to them (or their loved one).


*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
Don't ever give up...don't lose your spirit!

RSD Interview #15 - With Peggy Spencer

HOW AND WHEN DID YOU GET RSD?
I slipped on ice on the sidewalk on my way into work in February of 2012. Since I was on my way into work, this has been a worker's compensation injury. The worker's comp issue could be a story of it's own. I was simply diagnosed with a bone bruise and was told my patella was not tracking correctly. I was given a long, hinged brace to wear. I did have an initial 3 weeks off work after the injury and, when I returned to work, I was told that my face looked like I was in pain and the customers could see it. I was told that it would affect my upcoming evaluation as poor job performance. Pretty ridiculous. I managed to work and not leave early or call in because of the pain. RSD was not discussed until the middle of June and I was put on the waiting list for the pain clinic at the hospital. I was scheduled for an independent medical examination for worker's comp. I have heard many horror stories of these IME assessments, but their doctor agreed that this was more than likely RSD and that I needed evaluation and treatment, and sooner rather than later. My attorney told me this was extremely rare. When I finally got approval from work comp to go to pain management, my doctor had me pushed to the front of the waiting list because he knew time was of the essence. I was not officially diagnosed until the beginning of August, although I am pretty sure I had developed it by the beginning of March. When I realized the pain management doctor believed me about the pain, I sat and cried in his office. I was so thankful to have an answer about why I was hurting so much and have the compassion of the physician and his staff. He came in twice during his vacation time to do my first two nerve blocks because he didn't want me to lose out on time that could possibly help me go into remission.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I had recently lost 40 pounds and felt really good about myself and was having a great time, going out with my friends and being active. I had also recently been divorced and really for the first time in my life could do things just for me. After I got hurt and the pain started getting so bad, I almost completely shut myself off from everyone and everything. Only my two boys, who are 19 and 21, really knew what was going on with me, and I tried to hide the pain from them as well. Now I am not working, and I rarely step out of the house. Also, with this being worker's comp, I was not able to continue renting my apartment and I am now staying in my sister's basement. I was dating a very nice man who has two beautiful little daughters who are 7 and 8 years old. At first, I could play with them and have a great time. As the pain grew worse and worse, I realized that I could not give of myself the way those girls needed me to. I could not even walk through a store with them. I had to end that relationship, and although I was not "in love" with their father, I loved (and still love) those little girls, who desperately need a mommy. I just couldn't have them keep thinking I might be there for them like that. I also feel that I need to get myself as well as possible before I can really give of myself in that way.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have to answer this question with a yes--and no. I know my family understands that I have this condition and I am in pain. I have 3 sisters and they all have Fibromyalgia (so do I) and have also had multiple surgeries and health problems. It kind of gets to the point where, if I say something about how I feel with this, of course they know because they have Fibro, etc. One of my sisters and her husband have let me and one of my sons stay in their basement because they understand the financial aspect of my predicament. I never try to make it sound like the pain I have is worse than what they feel, because pain is so subjective. I do have to say that I wish I could go back to the days when my only diagnosis was Fibromyalgia. I have an older brother who also has RSD and, although he lives in another state, he has been able to answer questions. I have a few really great friends who take me to doctor appointments if they are out of town. It is really difficult, though, when they want to get together and go to dinner, shopping, or other things that I used to be able to do. I know they understand that I have this condition, but I know, too, it's hard for them to understand - if they have arthritis, a bad back, or any other condition that causes pain - why they can do these things, but I can't.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, I have been a Christian since I was very young. I've been through a lot in my life, healthwise and in general. I know I couldn't have made it through anything that happened in my past without God and, because He has been there for me through it all, I know He is with me now. If anyone understands pain, it is Jesus. I think about the pain He endured being beaten and crucified and I know no matter how bad I feel, He understands.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have had RSD for less than a year, so I don't think I have re-invented much about myself in that amount of time. I think I am just now realizing (even though I knew because I've read it and heard it) that this isn't going away any time soon and I need to learn to adjust. I have had to learn ways to dress so that I don't have clothing on my leg because of sensitivity. I also cut my hair short because I can't stand for very long to be "prissy" with myself, although I still fix my hair and put on make up if I'm going anywhere.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I know good will come from it, but I can't really see the whole picture yet. I know I want to be an example of strength to others. I research a lot about this condition so that I can raise awareness and also to help people who are diagnosed with RSD. I am still learning myself. If I have to go to vocational rehabilitation, I really want to go to school to be a counselor or an advocate, specifically in the pain management arena.

WHAT THINGS DO YOU MISS THE MOST?
There is so much that I miss, but I think what I miss the most is my independence. I can still physically do everything for myself, but not being able to afford to live on my own is the hardest part about this right now. I know it's temporary, though, so that makes it a little easier to handle.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want the general public just to know this condition even exists. It gets exhausting explaining it over and over again. I think that if people knew even a little bit about it there would be more understanding and compassion from people.

*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
Specifically, concerning cases of RSD that stem from workplace injuries, I would tell people not to let your employer or their worker's compensation insurer bully you into backing down. GET A LAWYER. That really applies to all work injuries, but this condition is hard to diagnose, is difficult and expensive to treat, and is not curable. I had to fight even to get an MRI because my employer's treating doctor sent me back to work with very little restriction and no need of any further care. The HR manager told me she didn't want to hear anymore about it.  Also, don't expect any compassion from your employer. All they are thinking about is how much their premiums are going to go up because of your injury. I was with them for 5 years, but it was very easy for them to blame me for slipping on ice on their sidewalk that hadn't been salted. No one is going to take care of the situation for you, so you have to do it yourself. If I had let them bully me, I would be unable to work and unable to pay for medical care for a monster of a disease that definitely needs attention.