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.

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.

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.

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 2^nd ). 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. 

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.

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.

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!