Wednesday, January 30, 2013

RSD Interview #22 - With Author Deeann Elizabeth Pavlick


#1 How and when did you get RSD?
I was diagnosed with RSD a few weeks after I had surgery. The IV Nurse severed my Radial Nerve in half, with the IV needle, which caused the RSD.

#2 In what ways has it affected your life?
In the beginning of the RSD, it destroyed everything; from my home life, to my businesses, to financial devastation. Plus, problems with my family and friends not understanding my pain or depression with RSD. I talk about it all in my book I wrote, entitled Soul Searching A Victim of Reflex Sympathetic Dystrophy.

#3 Do you have a good support system?
My support system grew after time with RSD . Now I have over 16,000 followers on all my sites; which, in turn, is a great support system for me (along with my family and friends).

#4 Does faith play a part in your struggle or your stamina?
As a Catholic, I pray to Jesus every day for strength and peace. As I pray for my family to be pain free and healthy, I believe it gives me strength everyday.

#5 How have you re-invented yourself?
I don't believe I reinvented myself but I took back my persona, personality and caring ability I had before RSD.

#6 Has anything good come from this trial?
Yes! I'm back to designing in my home & jewelry line. Also, working on two more books (being published soon) after already having two published. Plus, helping so many others around me and looking forward to new endeavors in my future.

# 7 What things do you miss the most?
What I miss the most is the time I lost getting to this point in my life, and the ability to use both of my hands. But I will strive on!

#8 What do you want the public to know about you and/or your disease?
I want the public to know about the book I wrote through living with RSD and, also, to know you can still live your dreams through RSD or any Chronic Pain condition.

#9 Is there anything you’d like to add?
Please remember! We all have one life to live. We only go around once, so live your dreams any way you can! God Bless!

Tuesday, January 29, 2013

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.

Saturday, January 26, 2013

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.

Friday, January 25, 2013

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.


  1. 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.


  1. 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.


.



  1. How have you reinvented yourself?
Nothing can bother me anymore, since nothing is or can be as bad as RSD.


  1. 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.


  1. 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.


  1. 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.




Sunday, January 20, 2013

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.

Friday, January 11, 2013

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 !

Thursday, January 10, 2013

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!

Wednesday, January 9, 2013

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.

Tuesday, January 8, 2013

RSD Interview #14 - With Kim Woldoff Barsky


HOW AND WHEN DID YOU GET RSD?
After being diagnosed in 2008 with Fibro, I was then  diagnosed in 2009 with RSD. I'm honestly not sure how I got this disease.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Completely. I am now on Social Security and I can't dress myself or do any menial tasks, such as:   grocery shopping, laundry, emptying the dishwasher, etc.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes. My husband is my caretaker and I would be lost without his help and support.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
It gets hard for me to keep faith, but I try to stay as positive as I can.

HOW HAVE YOU RE-INVENTED YOURSELF?
Sadly, I feel I reinvented myself as a recluse. I rarely leave my house and I’ve lost most of my friends.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Maybe getting to know myself and my body better, and it helped me appreciate my husband and true friends.
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WHAT THINGS DO YOU MISS THE MOST?
Going out to parties, or just going shopping and trying on clothes.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I'm not lazy...it's a real disease.

Monday, January 7, 2013

RSD Interview #13 - With Barbie Gallier


HOW AND WHEN DID YOU GET RSD?
On May 26, 2012, I fell in a puddle of water in a hallway at work. I dislocated my left knee (knee cap was completely behind my leg). I popped out my hip and messed up my ankle. I hit my right hip on the wall before hitting the floor.  I was 23 years old.
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IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I can no longer work, walk without crutches, or even bathe myself (because I am a fall risk). I lost my spot in nursing school, for which I had spent two years in school preparing. I'm no longer able to walk my dog, do my art or cook. I get tired after just a few minutes of physical activity, to the point of dripping with sweat and shaking from pain.
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DO YOU HAVE A GOOD SUPPORT SYSTEM?
It is my husband and my best friend that keep me going. My parents try, but my mom and her husband don't get it. My dad and step-mom help me as much as they can. My dog is my constant companion, protecting me and alerting my husband when I fall or am in extreme pain.
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DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
My beliefs tell me to slow down and reflect on my choices.
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HOW HAVE YOU RE-INVENTED YOURSELF?
I am trying, trying to find who I am because I attached my identity to what I was…homemaker, nurse aide, nurse student, artist and fun-loving, free spirit.
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HAS ANYTHING GOOD COME FROM THIS TRIAL?
I've learned to slow down and not to stress, as stress makes it worse. I'm learning my limits.
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WHAT THINGS DO YOU MISS THE MOST?
Not being in pain, walking without crutches, dancing, and being able to be up for more than 5 minutes without extreme pain and swelling.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Just because I look ok doesn't mean I'm not in pain. If I could get out of bed, I would. And, when I need to rest or use a wheelchair, please don't look down on me. My illness is not, and was not, my choice. Your understanding is a step closer to finding a cure or, at the very least, it is one less fear/worry.
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*I am not my illness. I'm a daughter, a sister, a wife and (one day) a mother. I am not lazy or stupid. My medicine makes me foggy and sleepy. I'm not RSD. I'm not CRPS. I am Barbie.

Sunday, January 6, 2013

RSD Interview #12 - With Anonymous


HOW AND WHEN DID YOU GET RSD?
While volunteering at a pet store, I was clawed by a frightened cat, which resulted in a myriad of symptoms to my left hand. Sadly, I received wrong treatment for my infection i.e. wrong doctors, wrong testing, wrong medicine; which led to the infection getting into the nerves and soft tissue, ultimately, leading to RSD. The incident occurred in November of 2010. I was diagnosed after one year and became full body four months after that.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It affected my career as a teacher because I needed to change jobs to get medical benefits.
It affected my extended family relationships because I can no longer travel back home, and they don't understand the changes in me or why I can't come home.
It has changed my day to day life, in many ways. For example, I walk with a cane, my driving is limited to short distances and only in the daytime.
I need help around the house and help setting up my classroom. I can no longer exercise, which was previously a big part of my life. I don't go out socially because of crowds and touching.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I do have a very good support system, but it's limited.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, I have faith that I will make it through.

HOW HAVE YOU RE-INVENTED YOURSELF?
I am very different now. I'm making the best of things, and I am determined to continue making positive steps and positive changes along the way.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes. I used to be very negative and now I've become more positive.
Plus, I now get front row parking, thanks to my handicap plate. And RSD Hope's mentoring program has given me much needed support, as well as a friend for life.

WHAT THINGS DO YOU MISS THE MOST?
Dating, high heels, exercise and sunbathing.

WHAT DO YOU WANT OTHERS TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want medical professionals to be trained and knowledgeable about the disease, rather than pretending to know and hurting the patient through ignorance. My long term goal is to start a charity to help those with RSD and to fund research that would help in finding a cure.

Saturday, January 5, 2013

RSD Interview ##11 - With Christine Hughes Hoggard


HOW AND WHEN DID YOU GET RSD?
 It is hard to say exactly when I got RSD but it started from a double-herniated disc at C4/C5 with entrapment of the C5 nerve root. I started seeing pain management in Jan. 2006 after my initial MRI showed the disc issues. I’m not sure exactly at what point my pain changed from just disc pain to RSD pain but I remember at some point in April/May 2006 there was a significant change in the frequency and intensity of my pain. During this time I was seeing a multitude of doctors—orthopedists, neurosurgeons, neurologists, etc. and undergoing numerous treatments—epidural injections, physical therapy, massage therapy, etc. In Oct 2006 I saw a neurosurgeon who suggested surgery. I already had an appointment scheduled on Nov. 20, 2006 to see a neurologist. Wanting another opinion, I kept the appointment. It was then that I was diagnosed with RSD. Not wanting to believe the neurologist’s diagnosis, I went through with surgery on Nov. 27, 2006 and had a cervical discectomy with fusion. While it did help some symptoms, it did not relieve my pain. Six weeks post-op my pain management doctor confirmed my neurologist’s diagnosis of RSD. (Ironically, within a short period of time I was also diagnosed with Sjogrens Syndrome, Fibromyalgia, CFS, and Palindromic Rheumatism.)

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
 The most significant way is no longer being able to work and being on full disability. At the time I was diagnosed I had just turned 39. I continued to work initially. (I was a charge nurse on a busy in-patient oncology unit.) The RSD was in my right upper arm/shoulder and neck. I was able to continue working until March 2008 when my Spinal Cord Stimulator stopped helping my pain and my RSD started spreading to my entire upper body and internal organs—stomach (gastroparesis) and heart (tachycardia and SVT). I found myself 40 and disabled! I also used to be much more active. I played co-ed softball and church league volleyball. I also sang in the church choir and was very involved in church ministry. (My husband is the Minister of Music at our church.) Prior to RSD, I took care of most of the household duties, something I suddenly found myself unable to do.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
 ABSOLUTELY! My husband has been amazing. We have always had a very close marriage but I have seen a new side of my husband that I cherish and adore. I have come to know a very caring, tender side of him that I had not seen before. He is so committed to me and our marriage and I really took that for granted before I became sick. He has had to pick up the slack for all the things I can no longer do and he has done so without complaining. He is my rock and my encourager. I have two adult sons (teenagers at the time of my diagnosis). They are now 23 and 22 (on Jan 2nd ). They are very compassionate, caring young men. My oldest is out on his own now. My youngest is still at home and helps quite a bit. My in-laws and parents are both in town and are supportive, as well. I also have a very loving, supportive church family that visits and brings meals occasionally or sends cards when I am not able to make it to church regularly.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
 Very much so. I rely a lot on prayer to make it through difficult times/days. I often listen to Contemporary Christian and/or Worship Music when the pain is real bad. Music really moves me. I miss singing in the choir but, with the RSD in my chest wall, it is difficult to sing. And the Sjogrens Syndrome has affected my vocal cords. But I still draw a lot of enjoyment from music. Sometimes my husband will play the guitar and sing and that helps relax me, too.

HOW HAVE YOU RE-INVENTED YOURSELF?
 That is a work in progress. LOL!

HAS ANYTHING GOOD COME FROM THIS TRIAL?
 I have learned a new depth of faith…of leaning on God. I have experienced a new depth of love for my husband. I have come to appreciate the small things in life. I have learned what is important and what is not. Health is so important, material things are not.

WHAT THINGS DO YOU MISS THE MOST?
By far, I miss Nursing the most. I loved my career so much. I would love to be able to go back to working with cancer patients again. I felt like it was more than just a job. It was a calling in life…my ministry to others. I miss sleeping in bed next to my husband. I am not able to sleep lying down so I sleep in a recliner for now. We are working on finding a solution for that. I miss being intimate with my husband on a regular basis. And I miss being active.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Even though most of the time I look “ok”, usually I am in a great deal of pain. Don’t touch me without asking me first. A hug, pat on the back or simple handshake can put me in bed for days or sometimes weeks!!! I’m still me! I have a disease but I’m still basically the same person I was before I got sick. Don’t act weird around me. Talk to me the same as you did before I got RSD. Don’t just talk about my illness. I get tired of it. 

Friday, January 4, 2013

RSD Interview #10 - With Mike Karnyski


HOW AND WHEN DID YOU GET RSD?
It was nineteen years ago that I developed RSD. It was caused by over 1,500 pounds of steel crushing my right dominant hand. .I had five operations on my hand, plus two amputations. I had my index finger, plus a quarter of my hand, amputated. My RSD started in my right hand and arm. Then it spread to my shoulders, my back, and both legs and feet.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I was a very active person. I was a Volunteer Fireman, played softball, bowled, was an avid bike rider, and liked to fish.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
My family and friends are my support system, as well as several groups online. I, also, belong to a group in Buffalo, NY. We meet once a month to talk, laugh and, sometimes, cry. I would recommend that you join a group, if you can, as it is very helpful. This way, you know that you are not alone. But I have to say that my biggest support comes from my two granddaughters. They make me forget the pain.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, faith plays a big part, even though I do not go to church. I pray to God everyday, asking him to help me get through this and help me to be a stronger person.

HOW HAVE YOU RE-INVENTED YOURSELF?
I am a mentor for people that are just getting diagnosed with RSD, to try and help them by answering questions and letting them know that they are not alone in dealing with this MONSTER. Also, I have done a few seminars with my doctor, talking about RSD and Spinal Cord Stimulators.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I am more understanding of people who have Chronic Pain, having experienced it myself for nineteen years.

WHAT THINGS DO YOU MISS THE MOST?
Not being able to serve my community as a fireman and not being able to do a lot of things I did before RSD.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Please, just because I do not look disabled, do not judge me to be a faker looking for sympathy. I wish people could walk just a few steps in my shoes to feel the pain that I feel. Then, if they still want to judge me, so be it. And just because I'm smiling doesn't mean I'm not in pain; it just makes me feel good.

Thursday, January 3, 2013

RSD Interview #9 - With Jennifer Ginsburg



HOW AND WHEN DID YOU GET RSD?

I got my RSD in May 1994. I had surgery to my knee about 4 years prior and I re-injured it. My orthopedic surgeon told me to go to 6 weeks of physical therapy and that I was a possible surgical candidate again. Physical Therapy was in my gym and my mom had just finished getting PT done for her, so they knew me well in there. During my 1st visit, they were icing my leg and it didn’t feel right. I told the therapist that I thought I was getting frost bite and he said “Shut up, Jen, you’re fine. The ice packs have not been on very long”. I ended up leaving with a giant red patch on the back of my calf and lost feeling in my toes that evening. The next morning I was admitted into the hospital and was diagnosed immediately.

I met with Dr. Schwartzman this past summer. He felt that it wasn’t frost bite that I experienced. Instead he felt that the episode at PT was actually cold Allodynia.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

Since I was diagnosed so early, my RSD was always easily treated with Lumbar Sympathetic Nerve Blocks. Unfortunately, I spread to full body starting in 2009. My life has been completely turned around since. I can no longer work and have relocated to be closer to my family. Every area of your life is really touched by this disease and there isn’t really any time that you’re not making a decision because of it.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I do have a good support system. My friends and family are always there for me. I have become very close to others with RSD and/or their family members and they, for the most part, provide the best support. Nobody can really conceptualize the gravity of this disease unless they directly feel the pain or see it on a daily basis.

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

I am spiritual but not religious. I don’t normally think faith plays a part in my illness. However, when I’m sitting here and actually attempting to associate it, it can be done. I do believe that no matter how much pain you’re in…tomorrow is always a new day and fresh start.

HOW HAVE YOU RE-INVENTED YOURSELF?

I think we’re always reinventing ourselves. I believe that is how we grow and evolve. I’m a completely different person than I was a few years ago. My career was always everything to me and now it’s a distant memory. I always defined myself as a career-woman and it’s taking a lot of soul searching to figure out how to define myself now. It’s a transformation-in-progress and I think it always will be. Just when you think you’ve got everything figured out with this disease, you’re faced with something else to adjust to, adapt to or figure out.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Yes. I’ve learned to appreciate what is truly important in life. I’m a bigger believer in being present in every moment and that time spent is more important than anything money can buy. I’m much more patient and understanding. For the first time in my adult life, I’m actually learning that I need help sometimes which is enormous for me since I was always so fiercely independent. I’ve also become more compassionate.

WHAT THINGS DO YOU MISS THE MOST?

I try not to think about what I miss the most. I try to reflect on the positives more than the negatives. It keeps my head in a healthy place. That being said, I miss my independence. It gets frustrating not being able to do basic tasks that used to be so easy.

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

I think others could benefit by realizing that we may look fine but we really are not. If you look at me and don’t see anything wrong, it’s because you don’t know what to look for. I may appear fine when you see me for lunch but what you’re not seeing is how long it takes for me to recover from it.

I also don’t think that people understand how many things are affected by this disease. It’s not just that I’m in indescribable pain. My breathing, heart rate, blood pressure, stomach, bladder, hearing, eyesight and countless other things are affected, too.

Wednesday, January 2, 2013

RSD Interview #8 - With Susan Boucher


HOW AND WHEN DID YOU GET RSD?
In March of 2009, a surgeon was doing Orthoscopic surgery and hit my nerve near my right ankle. There is a 7mm neuroma on my nerve.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I have been in pain since I had foot surgery in November of 2008.  Every part of my life has been affected, including my sex life, my social life, and the ability to walk around. Additionally, I am unable to volunteer as much as I have in the past.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
My children, my mother-in-law, my cousin and a few friends are supportive. My husband, not so much. We think he has Asperger and might not have the ability. I am now separated after 32 years.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
My stamina has changed! I struggle at times with God and wondering where he is, but I know I would be nowhere without Him!

HOW HAVE YOU RE-INVENTED YOURSELF?
I haven't reinvented myself too much. I have been in a stuck place.

WHAT THINGS DO YOU MISS THE MOST?
To just move around freely!


Tuesday, January 1, 2013

RSD Interview #7 - With Mary McCabe



HOW AND WHEN DID YOU GET RSD? 
I got RSD back in 2005, in either April or May (can't remember month). There was an elementary school across the street from my house that had basketball courts and I was shooting hoops with a friend, because that's what he wanted to do, and we were talking. All of a sudden, I tripped over my left foot. My mom first took me to the Pediatrician who suggested I see a Podiatrist because I don't walk right, but my mom decided to send me to a Sports Medicine doctor instead. He took an x-ray and didn't see anything, but said it's probably a stress fracture because they don't always show in regular x-rays, and he put me in a walking boot for the rest of the summer. Then my pain started to spread to the rest of my body, especially my hands. The doctor suspected I had JRA, so he ordered some blood work and, when I had a positive ANA, he sent me to Children's Hospital of Philadelphia Rheumatology and they diagnosed me with RSD in September. 

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE? 
I used to play violin all the time. Now I can rarely play, and only for short periods of time. In addition, I was at a college in Long Island that I loved but, because I dormed there, I had to go full time and take at least 12 credits, and it was three hours from my house. Being so far away and having to take a full course load took a toll on my body. I loved my classes and my friends, but now I'm transferring to a school near my house. In addition, I had an internship last summer that I went to on the first day but, after that, I had too much pain to show up the rest of the summer. 

DO YOU HAVE A GOOD SUPPORT SYSTEM? 
I find lots of support in my parents and grandparents. In addition, I am in several support groups on Facebook, and interact with many others with RSD on Twitter and Tumblr. 

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA? 
I used to be very religious. I used to be a part of the Catholic Club on campus. I could no longer go to their masses on Sunday nights, because my pain would flare at night (it always gets worse at night), and some members of this club got annoyed at me for this and said that if I only "practiced my daily faith" my pain would improve. This really turned me away from my religion. I had always been taught before that God wants us to be extra compassionate towards the sick, and some of the members did treat me with compassion, but many did not. I pray, but not as much as I used to.
 
HOW HAVE YOU RE-INVENTED YOURSELF? 
I now have a new career goal to work with computers. It's something that I can do without too much pain, and something I probably wouldn't have considered before this pain. 

HAS ANYTHING GOOD COME FROM THIS TRIAL? 
I have more compassion and sympathy towards others. I like to fundraise and create awareness for RSD. 

WHAT THINGS DO YOU MISS THE MOST? 
I miss playing my violin a lot. I also miss being a dependable person. I used to almost never cancel any plans or promises I made with friends. Now I frequently do, because of flares. 

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE? 
That there are good days and bad days to RSD. Just because one day I can do something and the next I can't, doesn't mean I’m a faker. Also, if I look good one day by putting on makeup, it's not because I feel good. It’s because I want to look decent and raise my self esteem.