Guest Blogger for RSDSA - RSDSA

You Have to Be There – Friendship and RSD

July 19, 2016

Written by Shannon Leidig for the RSDSA blog.

“You have to be there, you have to
Without you I drown in the deep
Too far, too far from land
The waters drag me down
I reach for your hand“

From the Musical Kristina

I remember several years ago driving to my weekly massage appointment, listening to the Broadway channel on Sirius XM, when all of the sudden, out of the blue, came a song that I had never heard, from a musical I had never heard of. I remember driving and sobbing/crying as this song sucker punched me in ways that I had thought about over my 26.5-year journey with RSD, but could not quite find the words. This song did it. I keep my radio on the Broadway channel and I kept thinking I would hear this song, but it never played when I wanted it to (that was the key in that I wanted it too). Well, during a very difficult, dark, and trying time, I turned on the radio. What did I hear? You got it- this song! Once again, I remember sobbing thinking about so many things, relating to not only RSD, but to relationships and life in general. It is the last two lines in particular that really hit me: “The waters drag me down; I reach for your hand.”

This musical details a family on a journey from Sweden to America during the mid-19^th century. Detailing a family’s poverty-driven migration from Sweden to America in the mid-19th century, Kristina sings this gut wrenching song, “You Have to Be There,” as she thinks of all the things that have gone wrong in her life- leaving home, losing her child, and the love of her husband. She desperately prays to God, not knowing what to do if He is not real. But again that line, “I reach for your hand…” How many times have we reached out our hands, sometimes others push and shove it away, wanting NOTHING to do with us? BUT, there are those who are so central to our lives- family and friends who grab on for dear life and walk this journey with us. Those are the folks I am proud to have in my life to hold my hand, walking through the good, the bad, the ugly, and the dark, yet the rainbow that always appears after a heavy rain and sunshine appear at the same time.

I have been thinking about this a lot lately – as several people have said: “Oh, I am going out for the holiday,” “I am going to ride this roller coaster, “I am going to hit the sun and surf,” et cetera, and then they ask me: “What are you going to do for fun?” Well, I’m not sure, but I know that whatever I do, I will be surrounded by people who will grab hold of my hand and carry me should I fall.

Once again, I was reminded of this at my doctor’s office today as I was having treatment. My nurse and I were talking and reflecting, and I mentioned to her that I would rather have a small group of great friends, who I know will be there for me no matter what and accept me, than to have tons of acquaintances who are there for convenience. That may sound harsh, BUT I have learned a lot about relationships in dealing with RSD for this length of time.

We struggle, just like so many others in life. We have obstacles. Ours are just harder to deal with, BUT if we have those folks in our life to help us, it makes things a little easier (and I for one am thankful for that). We grieve, we long for what we have lost, we seek answers and help wherever we can get it, we struggle to “fit in,” yet where does that get us? I know it landed me in a lot more pain.

I was diagnosed with this at the age of 19, as a freshman in college. This is a time in life when friendships are formed because (face it) we are with our college folk more than we are with our own families. Things were fine with my group of friends prior to RSD, but after, not quite. My friends did not understand nor, did they want too. Maybe they tried, but the pain world was so foreign to them they just could not wrap their minds around that.

Over the course of the years, friendships came and went, as some could accept what was wrong while others couldn’t. Heck, even my family had a difficult time, as RSD not only changed my life, but the lives of my family. Family as well as friends had to deal with the reality of planning things, whether it be vacations, shopping trips, movies, walks, get-togethers, outings, trips to NYC to catch shows that [could be planned ahead of time] but a lot depended on whether or not my body could and would cooperate. My mind would say: “Yes let’s do it,” but my body would respond, “Um not so much!” That was hard for those in my life to accept, and it was much harder on me. I felt I let them down. Over the years, they understood more, but it was still very difficult. We learned that sometimes it paid to have Plan A, Plan B and sometimes even Plan Z – just to be on the safe side.

Family to me is more than just being related by blood. I know that I consider my circle of friends as family, as they are there no matter what and will be. We have weathered many storms over the course of our lives, but NO matter what, we have been there for each other. They have stretched out their hands and I have grabbed hold and the reverse as well. I reached out my hand and they grabbed hold and held me up. They have told me and shared with me that it is okay to be me; they will accept me on my good days and the days that are not so good, days in which I do not know if I can make it, or days when I have wonderful news to share with them, or if I just need a cry or hug. They are family to me I am so thankful. This blog is dedicated to those who are in my life who have done just that! Thank you for grabbing hold and carrying me through the storms of life.

“You have to be there, you have to
Without you I drown in the deep
Too far, too far from land
The waters drag me down
I reach for your hand”

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CRPS Wedding Chronicles: Photographers

July 5, 2016

By Samantha Barrett for the RSDSA blog.

I’m back! We’re officially less than a year away from my CRPS wedding. I’m taking you all on this journey with me.

Believe it or not, I have shy tendencies. While I used to be able to perform at Celtics games, competitions, and recitals, that was with a group. When the attention is on me, I get quite nervous. Plus, over the past few years, I’ve become more self-conscious. Because of my inability to constantly be active, I’ve gained weight. My teeth have shifted despite having braces and a retainer for over 4 years (thank you, Ehlers-Danlos Syndrome). So, getting my pictures taken isn’t something that puts me at ease. My fiancé also gets very nervous at getting his pictures taken and has never had pictures professionally done. But, we needed a wedding photographer.

I went to a few bridal shows with my mom to check out different vendors. At one of the shows, there was this photographer that I just clicked with. Her practices are eco-friendly, she has a really great way of presenting the album, and she works with her husband. She was so sweet and just had the most breathtaking pictures. I kept her in mind as I checked out other vendors. No one seemed to click with me like she did. But, I selected two different photographers that I liked and had my fiancé look at their portfolios online. I was nervous he would select the person I wasn’t sure of, but he ended up picking the woman I really liked.

I set up a meeting with the photographer on a day where my fiancé and I could both go (our work schedules don’t mesh well right now). The photographer, named Amanda, decided she wanted to meet at Panera Bread so we could get some goodies while we chatted. I was so anxious when I got there that I was shaking and had to have a little extra help getting in. I had my list of questions in my planner and had anything I thought she would need with me.

As soon as we started talking, she completely put us both at ease. We had so much in common with her and her husband. She took an actual interest in the things we said. She embraced the fact that we are middle school sweethearts who were nicknamed “Beauty and the Beast.” She took so many notes and asked so many questions that she used to connect with us that if felt like we had known her for years. She was enthusiastic and just amazing.

Now, I know when I walk into a room people wonder why I walk with a cane. When Amanda asked if there was anything that she should know about us as a unit or separately, my fiancé and I knew we should at least address the whole thing. I started explaining CRPS/RSD to her (as well as EDS and POTS). I told her that I’m in and out of a wheelchair and that everything is unpredictable. My device of choice is a cane, but with the stress of a wedding, you never know when a flare will happen. Instead of being uneasy or pitying me, she asked what my limitations are on a good day and what they could be on a bad day. We made a plan for if I have to use my wheelchair, as I wanted to do my pictures in a local garden that isn’t the most handicap accessible. We also decided that I’ll have some sort of signal for if I can’t stand anymore and need to pause the pictures or if I need to sit. It was so nice to have someone that wasn’t afraid to address everything head on and to have someone that had so many ideas in case something happened. I also explained how the discoloration is something I get self-conscious of. We decided we would handle those pictures on a case by case basis, since I’m not trying to hide my CRPS/RSD from anyone.

We ended up deciding that we would go with her as our photographer. We are so excited to see what she does with us. We have engagement pictures set up for the fall, since I’m more of a flannel girl than a shorts and tank top girl. We will see where this goes.

Tips for Booking a Photographer

Have a few photographers in mind. View their portfolios, the different packages they offer, and reviews from previous clients
Go with a photographer that has images with the same feel as your wedding. If you’re having a very glamorous wedding, you may not want a photographer that exclusive does rustic weddings
Set up an in person meeting so you can get a feel for how the photographer will be.
Create a list of questions you may have for the photographer in general (you can look on WeddingWire or TheKnot to find example questions).
Make sure you are comfortable with the photographer. If you aren’t, your pictures may not come out the best since there will be an awkward energy
Don’t be afraid to address having CRPS/RSD- own it! Create a plan either on your own or with your photographer based on different pain scenarios or if you could change assistive devices. This could include an alternate list of shots you’ll want, a different place to have pictures taken, the quantity of posed pictures taken, and even the level of editing you would like done
Have a list of things you want from the photographer. Whether you want certain pictures taken, have certain places you would like to be, or any other things that you want.
Do a test run. Most photographers offer engagement photos as part of the package. That is the perfect way to test them out and is a great way for you to see how the photographer can adapt to changes you may need.

CRPS Supporters: You and Me Against the World

June 21, 2016

By Shannon for the RSDSA blog.

Sometimes, it just takes one person to make a significant difference in the life of someone with CRPS/RSD. For Shannon, that person is her mother. See how Shannon’s mom has helped her on her CRPS/RSD journey and how music tied them together even more.

I remember growing up and hearing the song “You and Me Against the World” on the radio. At the time, I did not appreciate all that it stood for; however, I do now. This could be yet another theme interwoven in my 26.5-year journey dealing with RSD, as this is how it has been for my mom and me. She has been by my side helping me to fight the battle, yet mom is fighting her own battle: having to watch me fight to get through each and every day. She thinks I do not see the emotions on her face or hear her silent tears; I know and that hurts me too.

I am the youngest of three and the only one my mom did not “push” (as my sisters would call it) to take piano lessons. I was the one who would rather play barbies outside with my friends or read, as I honestly did not want to play the piano. My mom is an amazing pianist. She started taking lessons at a Conservatory, though part of that meant she had to memorize music and take juries which consisted of playing your instrument of choice in front of faculty and getting a grade. That meant mom had to memorize her pieces, which were classical in nature (now I should say her piano instructor was Russian and was very strict). So, who was the one who helped mom? Me. I had played flute so I could help her. I fell in love with the music, passion, and emotion. Mom and I would sit down in the evenings and she would practice, and when she nailed it – GO MOM! Mom would play a variety of pieces from the great composers which inspired me. Finally, at the age of 14, the PIANO BUG bit me. As my sister would say, I took to the piano as a duck to water. I loved the playing the piano as it is such an expressive instrument. I knew my career would be in music.

My senior year of high school I elected to attend the same Conservatory as my mom, majoring in music therapy with a concentration in piano. Guess who was my teacher? Yep, the same as my mother. Freshman year was rough- adjusting to all the newness of being away from home and studying for exams as well as practicing. Not only [did I have to practice] my instrument, but I also had to take keyboard classes as well as guitar for my music therapy courses. My group of friends and I lived in the practice rooms. The conservatory was an hour from home, which was a blessing given the events that were about to occur.

I made it through my first semester and did fairly well – and then came Spring semester. Tuesday, February 13, 1990, literally one week after my 19^th birthday, I knew something was not right with my right hand. It hurt and it looked different. Naturally, I thought I had been practicing too much, since we were expected to be in the practice rooms a minimum of 8 hours a day. I figured I would go to the nurse later that day. Well, it also happened to be the day of my piano lesson and wouldn’t you know it my teacher thought I was faking the pain because I did not want to have my lesson (I was playing Mozart and loved the piece). I literally wanted to say to her: “Can’t you see my hand is swollen and hurts?” I went to the nurse and talked to her and she said it was probably carpal tunnel, but if [it did] not better let her know and we would see about going to the doctor. I called my parents and told them. I was crying; this pain was not the norm.

By the end of the week, my hand was just a part of me. I could not use it and it was so swollen and even a breeze hurt it, which I thought was odd. I saw an ortho [orthopedic] who was wonderful- very kind and caring. Her diagnosis was CTS and she put me in a splint. If [the wrist did not get] better, we could do a cortisone injection and possible surgery. Mom came to school that afternoon and picked me up so I could go home. The pain became more intense over the weekend and we called the nurse to tell her that something was going on. So, Monday I went back to the doctor and I had the cortisone injection – UGH! Did that sucker ever hurt! I also went for an EMG and was to return the next morning to see my doctor for the results. All of the medical personnel I met were shocked at how quickly this happened. My parents were like: “What the heck?!” I had no idea what was going on. All I knew was I was in severe pain and had no use of my right hand. I ended up having surgery on Thursday, February 22. The doctor told us it would be a fairly short and easy surgery. NOPE – not the case with me. There were things that just did not look right and the doctor was concerned. My parents took me home and I slept in their bed that night. Mom was my “nurse” and honestly I was so tanked on medication, I thought mom was an alien. She literally looked like a bug with eyes bulging out of her head.

Things progressed fairly quickly, as I had to have my other hand operated on too for carpal tunnel. Mom was the one to take me back and forth to the doctor. We would talk and laugh figured we had to do something to make this thing “fun.” One day, we were at the drive-thru at Wendy’s and mom was ordering taco salads, and for some reason she put the bag in the back seat. When it was time to eat mom said: “Shannon would you please hand me the bag?” I just started laughing, as here I was, both hands bandaged and I could not use them and she is asking me to hand her things. Well, in April of 1990, I was diagnosed with RSD. At that time, treatment was inpatient stay and [included] massive courses of steroids as well as antidepressants. You might as well have called me the “Witch from the Bad Place.” I was evil and nasty and said things that would never come out of my mouth! And I was angry?! My emotions were all over the place. I tried to go back and finish my semester with the help of my friends to catch me up. They also would be scribes for me, as I still could not write due to the pain. One night, I remember talking to mom, and I was so angry at her that I cursed her out told her I hated her and then I said: “I wish YOU had this and NOT ME!” I slammed the phone down and almost ripped it out of the wall. My roomie looked at me as though she had no idea who this person was, and honestly I did not either. Something was so wrong with me. I was in so much pain and could not think straight due to all the medication. What did I do, but scream at my mom? Honestly I regret that comment to this day.

Fast forward though through the journey as it is hard to write it all out, but I can say the one constant [person] who has been by my side is my mom. She has fought for me when others would turn the backs on me, she would encourage me when I was at the bottom of the barrel, she would stay up late at night when I could not sleep. We would watch old episodes of “I Love Lucy” and laugh. Our favorite episode is the Vitavitavegamin episode. Mom would spend the night at the hospital when I had surgery and was so scared. Mom also struggled silently, as she had no idea what was going on. She spent many nights crying herself to sleep.

Mom was the one who knew that to get back on normal ground, I had to find a way to use my music. She was an organist at the church and they were looking for a choir director. She volunteered me to help out, which I did and that led to me being their choir director for many years. I also became the choir director at my home church, which was cool as my father was the minister. It was neat, as here we are as family, but in the church we were seen as minister, choir director, and pianist! I pushed mom hard, as I expected a lot from her as well as from my choirs. But with mom, I did not have to tell her how I wanted this part of the anthem played or to speed up/slow down; mom knew. People would say to us: “You inhale and your mom exhales,” which is so true! Music was my source and strength.

My parents also encouraged me to return to college. I am so glad I did. I initially started out as a music education major, but switched to majoring in psychology with minors in music and education. Mom was the one who encouraged me to keep on fighting; she would stay up late again helping me study for exams. We would spend many doctor appointments studying for exams, as one of my professors would give the class the test though we had to dig thru the books to find the answers, but I did. We would study to and fro and while we were at the appointment. I remember one of my classes we had to analyze all of the third movements to Beethoven’s nine symphonies. This happened during one of my really bad times. Who was my cheerleader? Mom! She was telling me I could do it and I did, but oh the pain of that.

It has been a roller coaster of 26 years in dealing with this beast. So many emotions, but I have had the unconditional love and understanding of amazing and loving parents. They have both battled so many emotions and, honestly, it hurts me so much to see them go through their own hurt and pain. It is so true that this beast impacts all of those around you in your life. My parents have given time and time again, no questions asked. Their support, their love, and their caring just amazes me each and every day.

As I reflect on this journey, I recall the words an amazing woman (my mother who is my best friend) said early on in this journey. It has been “You and Me Against the world.” We have laughed, cried, screamed, and still talk about that horrific comment that I made to her many years ago. It makes me cringe to this day. My mom has been my rock, my source of strength, and I am truly blessed to know that on this journey it has been:

“You and me against the world,

Sometimes it feels like you and me against the world,

When all the others turn their backs and walk away

You can count on me to stay

You and me against the world,

Sometimes it feels like you and me against the world

And for all the times we’ve cried I always felt that

God was on our side”

Lyrics by Helen Reddy

Team Caroline: A CRPS Story of Hope & Of Giving Back

June 14, 2016

Written by Caroline Bert for the RSDSA blog.

Caroline is a CRPS/RSD warrior that has been fighting for about 9 years. Now, Caroline is doing what she can to defy CRPS “limits” and to make a difference in the CRPS/RSD community through fundraisers.

My name is Caroline Bert and I am 21 years old. In 2007 I broke my left wrist, when the doctor took my cast off my arm was crooked. After 11 months of many doctors ruling things out, my diagnosis was Reflex Sympathetic Dystrophy. Dr. Neil Kirschen treated me by a series of 3 stellate ganglion nerve blocks , and then on the first treatment of the second series I woke up with full relief. I went into a 3-year remission until 2011 when I re-injured my left wrist working as a hostess at a restaurant. We tried the nerve blocks, but because my nerves were already scrambled from the previous blocks it had an opposite effect, causing a flare up during the procedure.

It was time to explore other options. Calmare treatment was unbearable, acupuncture was as well, and physical therapy was torture. With high hopes I stepped into Dr. Brian Durkin’s office, I put all of my trust into him and it was the smartest thing I have ever done. Dr. Durkin is the best doctor on the planet. He has made it possible for me to accomplish more than I could’ve dreamed. In 2012 I had my first ketamine-lidocaine infusion at Stony Brook Medical Center. After waking up from the infusion my pain level went from a 9/10-2/10. I was able to take the brace off of my arm and I could even touch it. This is something that I had not felt in a long time, and it was relief.

What I liked most about Dr.Durkin was that he encouraged me to live how I wanted to, and gave me the all the help I needed to do that. Many doctors would say that being a dancer with RSD is very dangerous. I was told to stop dancing and one doctor even told my mom that “saying your child with RSD wants to be a dancer is like saying that your child the hemophiliac wants to work at a glass factory.” But Dr.Durkin said that dance was a form of physical therapy for me. And that as long as I knew my limits and listened to my body, I could be a dancer even with RSD. He told me that most people who have had RSD will have it spread to other parts of their body, but me being active was preventing that. He never told me to quit doing what I love.

In 2012 I went away to SUNY Potsdam as a double major dance and photography, however due to the cold weather and a fall on the ice I developed RSD in my right wrist that winter. I came home and then went back to Potsdam. I loved Potsdam but it was not a good place to be with RSD. The doctors were unfamiliar with it, a trip home takes all day, and the cold weather makes it worse. In 2014 I came home for good. The RSD in both wrists was at the worst it has ever been and every time I came home I had to miss more school, it was not worth it. After coming home, I was able to see my doctors regularly, I was always able to get my prescriptions refilled on time, and I had my family around to make sure I was okay. I took classes at Nassau Community college while figuring things out. coming home was hard but it was what I needed. I got 4.0 in every class, and started working for the New York Yankees as a fan photographer. I get infusions every 6 weeks and I am able to do everything I love to do, to live a somewhat normal life under these rare but difficult conditions.

My first Achilles walk was in 2012 (The year I graduated High School) and my shirt read: “RSD won’t stop be from being a dancer, a photographer, or graduating” It was amazing to meet so many others that could understand what I am going through.

This year my mom and my friend Annette wanted to raise more money for the walk than we ever had in years past. They took on the task of planning my fundraiser, because they love and support me so much. We held the RSD/CRPS Fundraiser on June 3rd from 8-11 at a local bar called “J.Pauls Terrace Cafe”. My dad Glenn Bert and friend Annette Quinn were guest bartenders and 20% of what was made at the bar during the fundraiser was donated to the walk. We also sold raffle baskets and 50/50. We had an outstanding turnout and live music by my cousin Jake Incao. It was an amazing night and I could not help but feel blessed because as I looked around at the crowd in the bar that night I was reminded what an incredible support system I have. We raised over $2,500 that night, and the donations keep coming from some friends that were not able to make it. I would say that the fundraiser was very successful because although it is great that we raised so much money, I think it is even better that we raised the awareness in my community. During the fundraiser so many people asked me questions about what RSD is and I was so happy to educate them because next time they meet someone with RSD they won’t have to ask “what’s that?”

So, while we made a lot of money we ultimately achieved our goal of raising awareness in the process. My support system took on this entire project of creating a fundraiser on their own. It was put together by the people who have seen me at my worst and still love me. They organized raffles, donated their time and services, and advertised the event as much as possible. If people would like to donate to Team Caroline, please click this link.

A Journey with CRPS/RSD Through the Gift of Music

June 7, 2016

By Shannon L. for the RSDSA blog.

Everyone has that one thing that gets them through their CRPS/RSD battle. For Shannon, it is music. Read her story below.

“WOW” is all I can say as I sit back and reflect on the past 26.5 years in dealing with RSD (yes, I know the correct term is CRPS but I still call it RSD). In the midst of all the changes in my life as a result of RSD, the one constant in my life has been my music and how it has helped me deal with the pain.

I have been wondering how to even start this blog, as so much has happened over 26.5 years – all the doctor appointments, surgeries, blocks, changes in relationships (with both family and friends), career. As I was sitting at the doctor’s office one Friday, getting yet another treatment for RSD (the bazillionth one or so it seemed) my nurses were talking to me about how RSD became a part of my life. I began telling the story and one thing was a common and constant factor: MUSIC. You see, even from the very beginning, in the times of the clunky Walkman’s to portable CD players to iPods and now smart phones, my music went everywhere with me. My doctors knew from the get go that, no matter what, I was going to listen to music (even in the Operating Room).

I was a music therapy major in college, with my goal being to work with autistic children and help them with music. My second semester started and all seemed to be going well until February 13, 1990, one week to the day after my 19^th birthday. As I was getting ready for my weekly piano lesson, I noticed my hand was not right – there was so much pain and I could not use it. I was thinking about how in the world I was going to get through my lesson, as well as the rest of my classes which consisted of keyboard, harmony, and guitar. Well, needless to say my instructors were at a total loss and the journey of endless trips to doctors began, as well as taking my music with me. I would listen to classical music with my favorite piece being Bach’s Toccata and Fugue in D Minor and Beethoven, who endured much hardship in his life and yet wrote beautiful music that can hit every emotion one can imagine.

I ended up having surgery for what was thought to be carpal tunnel on both hands. In April 1990, I was diagnosed with RSD. I am sitting there thinking what the heck is this? At that time, doctors did not know too much about this beast. All I was told was I would not finish college, nor would I be able to work. How can a doctor tell a 19-year-old kid this? I had plans! I wanted to play the piano and use my music to help others. What was I to do? I went through every stage of emotion you could imagine and I turned to music to help me cope. Another song that kept repeating on the radio was You and Me Against the World, and that is what my mom told me. She would stand by me and help me fight this. Yet, all I could think of is my life in music is over.

So I thought. My father is a minister and my mother was an organist. The church happened to be looking for a choir director and mom thought what better way to get me to use my music [background] than to direct. I started helping the choir and found directing to be so therapeutic and yet another way for me to escape the pain. There was one particular choral composer whose music helped me and seemed to reach the very depth of my soul. When I was at my lowest, I would listen to recordings of his anthems over and over again and pray for the strength to get through this. I could throw myself into music, planning anthems and rehearsals. I would forget how much pain I was and the severity of it. Many people seemed to question whether I was in pain because “I looked so good.” My point then was I am Shannon who happens to have RSD – not oh by the way I have RSD and my name is Shannon. I fought so hard to be known as me and not the pain, even though it was hard. I also directed the adult choir at my father’s church as well as a men’s chorus, which was wonderful. Yet again, I could escape for a little while and focus on their singing and teaching them just how I wanted the anthems to be sung as they were painting a picture with the words of the anthems. Once again, the music of this one composer helped me. My hope was to one day work with him in having a concert with my combined choirs. In November 2000, we did just that! He traveled from Ohio and rehearsed with my choirs on a Wednesday night and then we had a concert the following night. Talk about AWESOME! The choirs would do cantatas at Christmas time and one particular was called The Journey of Hope. We did this two different times and after the second time I just sobbed and cried, as no matter what, on this journey, we have to have HOPE!

Every surgery I went through, I had music with me and the doctors would be cracking up as I would be laying on the OR table singing in my own little world. I would ask the doctors how long surgery would be and plan my tunes accordingly so that I would end with There’s a Light at the End of the Tunnel from Starlight Express. I have always felt that there is a light at the end of the tunnel. For me, that light is knowing I have accomplished something during the day, no matter how large or how small.

I am also a huge fan of Broadway shows and am so fortunate to live close to the Baltimore and Washington area, which is rich in theatre. One particular show I saw, which I remember sitting there crying through, was “The Secret Garden.” The song Hold On got me through some very difficult times as it says: “It’s the storm, not you, that’s bound to blow away.” That is so true. The pain can be raging, but that does not define who I am; it is not going to defeat me. I have often said that my legs would cooperate long enough for me to get through my day at work then act up when I am home. I am bound and determined to have as normal of a life as possible.

I also saw the show “Kinky Boots” and I absolutely loved it. This show has such a tremendous message- do not judge a book by its cover. Much too often I hear: “How can you be in pain? You look so good,” or “You cannot hurt that badly, you are working,” as well as “Don’t I see you walk every day?” What people do not see is the struggle that happens behind the scenes – how difficult it is to get through the day, to try and live a normal life, though I honestly do not know what normal is any longer. My life has been on a huge roller coaster since 1990.

This journey has taught me so many things, some good and yet some not so good. Through it all it has been my parents and myself against the world, fighting tooth and nail, each and every step of the way. I have learned the hard way who my true friends are, as this is not easy for anyone, even our doctors. I am truly blessed and thankful to have the doctors I have now. They treat me as a person and know I want to continue to work and have a life. I am determined to just be who I want to be- a fighter determined to get through this.

One thing that helped me was accepting this as I learned it is not ME – it is a part of me, but RSD does not define me. I am Shannon who has RSD in both legs BUT I am determined to work and have a life. It may not be what I thought it would be 19 years ago, but that is okay. Another song that has helped me is the song “Grateful” by Rita Ora:

“I’m grateful for the storm ~ Made me appreciate the sun
I’m grateful for the wrong ones ~ Made me appreciate the right ones
I’m grateful for the pain ~ For everything that made me break
I’m thankful for all my scars ~ ‘Cause they only make my heart
Grateful”

You see, what my music has helped me see is that if we hold on long enough, and hold on tightly, there is a light at the end of the tunnel. We have to rise up and fight and be who we are, let others see that NO matter what, we are people first and not our RSD. In the end, I can say that I am grateful for the pain. Do I like it, NO, but it has taught me so many things and helped to shape me into the person I am today. Through this journey I have met some amazing people, many of whom inspire me each and every day. I have the most amazing parents and so blessed to have friends who understand and care as well as to have doctors who get it and an employer who understands. I’m grateful for the pain and everything that made me brave, I’m thankful for the storm… I’m grateful.

CRPS Wedding Chronicles: The Dress

May 24, 2016

By Samantha Barrett, Special Events Coordinator

It’s been a bit since I wrote about wedding planning with CRPS. But let me tell you, a lot has been going on behind the scenes. You think that starting to plan almost two years in advance would be enough, but obstacles do come up. If you want to read about the proposal, click here. If you want to read about how I picked my venue, click here.

Before we delve into wedding dress shopping, I wanted to say something. Just because you have CRPS or your significant other has CRPS doesn’t mean you can’t get married and live out your fairy tale. CRPS is a challenge, I would never deny that. I believe the “in sickness and in health” portion of standard vows applies greatly here. You are lovable. You are capable of loving. You need to do what is best for you. Don’t push people away because you have CRPS. While you may think it could be easier or will cause the other person less pain, that isn’t necessarily true. True love knows no boundaries. So many of you have sent me beautiful emails about wanting to have a wedding, but not thinking it was possible until now. It is possible! If you or your partner are hesitant, make sure you have an open and honest discussion.

Okay here we go!

Although my wedding isn’t until next year, I wanted to get a head start on everything. Between planning the wedding and planning events for RSDSA, I have to make sure I stick to a timeline so I don’t get overwhelmed as the wedding gets closer. Who wants to have a CRPS flare for their wedding? Not me!

I made a dress appointment early. I have been studying wedding dresses since high school. Yes, studying! I was in a fashion marketing class that I had to create a magazine for. Mine happened to be on wedding fashion. I also watch Say Yes to the Dress, I Found the Gown, and other wedding shows on a regular basis. I was completely prepared going into this appointment.

So, how did I prep for this appointment? I utilized my personal Pinterest to look at styles of dresses I liked. I had a couple of my bridesmaids and my mom add to this board since I wanted options (although, we ended up pinning the same dresses). Since I was going to a specific store, I also found dresses I liked from that store and took down their numbers so they could pull the dresses easier. I made a list of things I wanted my dress to have as well as a list of things that would make or break the sale. One of the key elements was that the dress did not irritate my skin because of the fabric. I do have extremely sensitive skin because of CRPS, so I didn’t want to be instantly uncomfortable. If I was instantly uncomfortable, imagine how I’d be by the end of the wedding day! I wanted a glamorous dress that wasn’t too heavy. The very last thing I would need is to be weighed down by my dress. That could have led to several different things: limb irritation, overheating, exhaustion, and even being too weighed down to walk. It sounds like a lot, but it actually did not limit my selection too much.

The consultant I had was actually the store’s manager, which worked in my favor. I warned her that I am sensitive to touch because of the CRPS, so when she helped me into dresses I needed her to be extremely careful. She found ways to help me get into dresses with the least amount of irritation possible. (Yes, I make everything a CRPS awareness opportunity). I told her the style I wanted, but that I was open to anything. She let me try on the specific dress that I went in for and then used that as the base. I started with a larger than life, excessive ball gown (as seen in the images above and below). We thought it was pretty and that it would be THE dress, but we were quite wrong. Looking back at the pictures that my mother and bridesmaids took, I’m glad I didn’t end up with that dress! I tried on about twelve dresses. The dress I ended up with was nothing I expected. (I can’t give away too many details here just in case the fiancé gets nosey). The dress passed all of my tests. I wasted time prior to taking it off to make sure the fabric was not irritating and to make sure it wasn’t too heavy. I half-danced in it to make sure I could move. I used my cane to make sure it wouldn’t get in the way while I walked. I walked back and forth the length of the store to see if I had any issues in it while I walked down a narrow aisle with gown and cane surrounding me. No issues. It is the perfect dress.

My mom and my two best friends all instantly got on their feet as soon as I came out of the room with that dress on. It was much more elegant than a few of the princess-like dresses I had tried on. They all examined it very closely. Then it happened- everyone cried. Now, I must admit I was shocked to see this, because my two friends hate to cry (my mom and I are the same person, so I was just waiting for her to cry). So, I bought the dress… and the headpieces. I almost show my fiancé my dress about once a day and then remember he’s not allowed to see it. I had to delete it off of my phone because I was so tempted. Only 13 months until he can see it (and until I can share it with all of you).

Are you getting married and going dress shopping soon? Here’s what I recommend:

Establish a price point right away. So many of us are on a tight budget because of CRPS. Make sure you make this budget clear to your consultant (and to yourself).
Call the bridal shop ahead of time to make an appointment. You may want to prepare them ahead of time by telling them if you are mobility impaired and/or sensitive to touch. You will want to remind them again when you get to the appointment.
Find a style of dress that you like and bring pictures! You need a starting point.
Don’t be set on one style of dress. You may discover that the dress style you thought was awful actually looks best on you
Look at the fabrics of the dresses you like online. Are they materials that would irritate your skin? You may want to bring your own slip or call the shop ahead of time to see what they can do.
Test the dress out. Don’t be afraid to try to wear it around the shop or move around the best you can in it. If you use a mobility device, make sure that the dress can be altered to accommodate it.
Don’t forget that alterations and accessories are not included in your dress price. Factor that in as well.

The True Definition of a CRPS “Warrior”

May 17, 2016

By Anna Evenosky for the RSDSA blog.

What is the true definition of a CRPS Warrior?

We refer to ourselves all the time as “CRPS Warriors.” Although, what does it truly mean to be a warrior? Warrior is defined as, a brave or experienced soldier or fighter. So yes, we do fit under this definition considering every day we have no choice but to fight. We fight to keep our function and fight to keep our spirits bright and alive. Recently, I have had endless things go wrong for me. On top of Complex Regional Pain Syndrome (CRPS), I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), my depression came on full force, and my anxiety on how I will go on temporarily crippled me. I felt that I had every right to give up, I asked myself why I must endure so much physical and mental pain, as I’m sure many of you have.

Although, being seventeen years old, I’m convinced that my purpose here on Earth is to be a crutch for the chronic illness community, to support them, and to raise awareness. This task always lingering in the back of my mind gives me the ability to power through just about anything life throws in my direction. After all, I’m on a mission to make a difference and there is not anything or anyone that can stop me.

So here I am, I’m on homebound, and many days I don’t even feel well enough to get out of bed. Although I know that you always must work with what you got. My brain wandered trying to come up with a hobby that could keep me occupied as well as my spirits high. I tried a few things out, some I found enjoyable and some I did not. One day it finally hit me that I wanted to be a writer. I started out small, writing blog posts that never actually went out to anybody. Then that small little hobby of mine grew big. I started writing for “The Mighty”, a medical blog with around 80 million readers, this allowed for several of my articles to go viral. Then I began writing for the RSDSA (Reflex Sympathetic Dystrophy Association). I started setting goals that seemed like the impossible. I’m happy to say that despite everything life has thrown my way this past year, I have been hired as Editor in Chief and a writer for “Odyssey.” This is a paid position at Odyssey with internship credit and the ability to walk into college with a professional portfolio. In addition, at seventeen years old I will have my very own article based on invisible illnesses published on Yahoo. My favorite thing about this hobby of mine is the feedback and endless thank yous I receive. There is nothing more rewarding then knowing the impact my words alone have on people. My fight and mission to help the CRPS community will go beyond this. I just recently committed to Rutgers- Camden as a biology major as one of many steps to pursuing my goal of becoming a physical therapist. I am now more motivated than ever to become a physical therapist that patients can whole-heartedly relate to and look up to.

So, when everything seemed to be going wrong things managed to turn around and began to go right for me. So, yes, I’m a warrior, as I’m sure you are too. But what truly makes us that fighter is the ability to push through any hardships that life throws our way and do it with grace. With grace to show that it is possible to find positive in every negative. We do it with a smile on our faces to mask the pain, maybe in hopes of avoiding making other people feel uncomfortable or maybe in hopes of hiding what you don’t want to be known.

So, to all those warriors out there who have every right to give up, props to you for pushing on. Your strength is an amazing thing and not something that many people are able to say they have. I have people say all the time “I don’t know how she does it.” I do it because I rather push through and make the best out of my situation than sit back and ask: “Why me?” and grieve about it. This life we live is too precious and short to be upset over the unchangeable. The ability to be positive through the negative, to be happy through the sad, to smile through the pain, and to be successful when life has set us up for failure that is what makes each and every one of us a warrior.

Anna Evenosky: Just a teenage girl trying to make a difference…writer for Odyssey, The Mighty, and RSDSA.

But I Still Look Fine – Living with Chronic Pain/CRPS

May 10, 2016

By Guest Blogger Tara White, RN

I used to be a very active woman. I proudly served as a corpsman in the United States Navy for five years. I went to Nursing School and loved working in Obstetrics for twenty years. I climbed the difficult back of Half Dome in Yosemite National Park twice, and felt alive while cycling many hundreds of miles a year. I loved training with weights, power walking, skiing, kayaking, yoga, and many other outdoor activities.

Like many other women, I made a very poor choice of a first husband, though got a wonderful daughter out of the deal. Raising her by myself with microscopic child support but tremendous family support, I’ve watched her bloom into a lovely woman in her own right. Although I didn’t realize it at the time, my inner light was shining brightly. I looked fine.

It started out as carpal tunnel, although I did not have the typical presentation. My wrists ached and I couldn’t even get my left (dominant) arm in a position that didn’t produce horrible nerve pain. After surgery, I fully expected to return to work as a nurse until retirement. But, it didn’t work out that way. My pain changed after surgery but never went away. I made an attempt to return, because that’s what nurses do. Diagnosed with Complex Regional Pain Syndrome (CRPS), my hands, wrists and left elbow felt like they were on fire or had hot wires shoved in. I only made it a few months. But, I still looked fine.

It took two years for the guilt and shame of not being able to work or “pull my share” to slowly evolve into acceptance. Needing purpose in my life, I turned to the American Chronic Pain Association and became a Facilitator for the Sacramento area. I wanted to help others suffering from debilitating chronic pain. Luckily, prior to being hurt, I had met the love of my life and we married nearly two years later. God knew what he was doing when he gave me an engineer. I would need his wonderful skills many times over. So that I could continue cycling, he designed time trial bars so that I could ride (yes, I was always peddling) as a stoker in the back of a tandem while he controlled everything from the front. We toured Europe and nothing gave us more joy than the freedom in Grand Mother Nature on a bike. A health nut, I continued exercising with my legs and taking care of myself. I was still disabled, yet I could still do many of the things I so loved. But, I still looked fine.

Then, nerve problems reared their ugly heads in my left leg. I stumped physicians because none of my symptoms fit neatly into any category. Multiple nerve entrapment surgeries later, I could still keep going. I could still worship Mother Nature by cycling and long walks. The recoveries were tough, but with my wonderful husband by my side, I could still be me. And, I still looked fine.

Now, as I write this everything has suddenly changed. I tried to do too much too fast, and I find myself suffering anywhere from walking on needles, to electrical jolts, to exquisitely painful electrocutions. I am praying for the courage and hope to go on, and choose to stay in denial. I can do no more than walk around the house, to the mailbox, or a light, short errand. My physicians are trying, but I have many “extra” inflamed nerves trying to fit into the space made for one, am a big scar producer requiring a repeat of previously done surgeries, and even produce scar formations the physicians have only heard of or seen at conferences. But, I still look fine.

I continue to Facilitate for the American Chronic Pain Association and have added phone banking as much as possible for my heroine and Presidential Candidate, Hillary Clinton. (This, too, is difficult as I have one paralyzed vocal cord from thyroid cancer). I cry all the time, yet cling to hope. As a child’s life broadens from home, to school, to the whole world; mine is diminishing just as quickly in the opposite direction. I will go down fighting and clinging to denial. My inner light is fading fast. But, I still look fine.

My Journey Back to Health: Barbara Wall and RSD

May 3, 2016

By Guest Blogger Barbara Wall, Power Over Pain of Arkansas

This is a success story from someone with RSD/CRPS that saw Dr. Katinka van der Merwe. To read our article on Dr. Katinka van der Merwe’s approach, click here.

I was living life and enjoying all things around me. I did not feel that I took much of anything for granted. In 2005, I suffered a severe injury to my cervical spine (broken neck) as well as other injuries. As if dealing with a broken neck was not enough I received the diagnosis of Reflex Sympathetic Dystrophy (RSD), today known as Complex Regional Pain Syndrome (CRPS). I had the opportunity to practice as a registered nurse for twenty five years. I was hoping to get beyond this illness and the acute daily pain in order to continue my professional career. I did absolutely everything the doctors ordered and pushed myself each and every day during physical therapy. After a host of medication changes and numerous stellate ganglion blocks, lumbar sympathetic blocks, and cervical epidural steroid injections my body did not go into remission. I was forced to quit a career I absolutely loved and began focusing on my health. Every day was full of appointments, disappointments, physical therapy, occupational and pool therapy.

I was able to establish a great team of medical doctors and felt comfortable with my care. The pain continued to overwhelm my mind and body. My family remained so supportive and encouraging, but I needed a strength so far greater than they could give. Each day was such a challenge, but with God, family, and my own inner strength I was able to wake up every morning and tell myself “I can and I will do this.” As days, months, and years passed by with constant pain, I was able to keep my attitude in the game of life and continue to fight this fight. I was finally approved for a spinal cord stimulator (SCS) and responded well to the three day trial. Months after the trial I was approved for a permanently implanted SCS. My quality of life was drastically improved and it gave me enough relief most days to continue my daily regime of physical therapy and two hours of pool therapy. We could not decrease any of my medication or I would have a setback. I totally relied on my SCS for pain control because I did not respond to narcotic medications.

I would define the past ten years with full body RSD as mind blowing, traumatic, overwhelming, and most of all changing. I have a great joy for life and all the wonderful opportunities it has to offer. Opportunities are not without work and living with this condition is work, hard work.

In June 2015, things would again change. Even though I continued to live with daily pain, that would also change. Yes, it changed for the worse. I made a simple movement with my neck and felt a horrible pop with lightning pain. I could not raise my head and the pain was intense. My SCS would not touch the pain which was unusual. After weeks of sleeplessness nights, severe pain, and diagnostic tests we found the culprit. I had damaged two of the discs in my neck and therefore, pushed my SCS paddle to the right. Because the paddle had shifted, I lost all coverage for pain on the left side. Now I had to decide what to do and how to treat this. My concerns were so overwhelming about surgery and the risk of exacerbating the RSD. My spine specialist was concerned about the surgery and the risks involved. We did not want to send my body into a state that would push me back to the initial insult. I did not want to EVER go back to where I was ten years ago. I have dedicated my life to rehabilitation and maintaining what I have achieved with all of my therapies.

After lots of research and answers to many prayers, I found a doctor in my home state of Arkansas that was having amazing results with RSD patients. Dr. Katinka van der Merwe is a chiropractor that specializes in Quantum Neurology. Quantum Neurology is all about restoring balance in the Autonomic Nervous System. October 12, 2015, was my first appointment with Dr. Katinka and I was cautiously optimistic. I had never been evaluated nor treated by a chiropractor before. She does not perform manipulations as part of her “Three Punch” system. The treatment modalities and techniques that she uses are unlike any I have ever received. Her technique is painless, non-invasive, and does not require any medications. The day I arrived at her clinic my pain level was 8/10. After my initial evaluation and treatment my pain had dropped to a 4/10. As the weeks and treatments progressed my pain level has remained at a zero the majority of the time.

As most of you are aware RSD has no known cure, but there is hope in hopeless situations. Even with my continued spine issues and the need for surgery on my cervical spine, I have been able to maintain low to no pain with my RSD. I cannot tell you how amazing it is after ten years of chronic pain to actually sleep throughout the night, to not feel like you are burning from within, and to finally be able to plan events in my life.

After completing ten weeks of treatments with Dr. Katinka I have been able to slowly stop all of my RSD prescription medications. My mind feels so much more alert and the ability to communicate without losing your train of thought is amazing. I am forever grateful that Dr. Katinka has such a passion and desire to help those who suffer from this isolating, devastating, life altering condition. Do not accept life as it is if you are suffering, and never give up hope! I encourage you to be your own advocate and get help.

Trying with CRPS: What Do You Do?

April 26, 2016

By Autumn Strand for the RSDSA blog.

687 days ago I was robbed. Nothing of any monetary value was taken but something much more priceless was: my health.

When you think about the value of things and what they mean to you, I believe that one’s health is often overlooked. That is, until it isn’t anymore.

Before I fell and got RSD/CRPS, I was a college student studying journalism at the University of South Florida and I loved it. It was challenging in a way that took me completely out of my comfort zone, made me think about things with a different outlook and was the most difficult thing I have ever done but I really thrived on it because it was a dream being realized. I have never been what you would call a “social butterfly,” but I had friends and I did things that made me happy. I went to concerts frequently and in the short time I was at my university I saw Elton John, The Lumineers, Imagine Dragons, The Neighbourhood and Luke Bryan in concert (to name a few). Nothing would make me happier than to go to a show and watch live music. This was my drug. I would drive all over Tampa exploring new places and doing new things. I would make the 3 hour drive to Jacksonville to see my family and do fun things with them. The only thing that held me back was my imagination.

Fast forward to now.

I speak a lot about what has been taken from me. All of the things I mentioned above have been taken from me, but also so much more. Pain is now the theme of my life instead of happiness. My drug is no longer music; it is a wide array of things that are supposed to make me feel better. Spoiler alert: they don’t. I couldn’t even consider going to a live music show now because the music would cause me to not only have a tremor, but it would cause severe pain. I cannot drive around anywhere for very long because a paroxysm is sure to hit me at any moment. One of my favorite things used to be driving around with the windows down and the music loud. Now it’s more like driving to the doctor with the music very low. Music and driving weren’t the only things taken from me though. Every single aspect of my health was. I wake up in pain every day and go to bed in pain every night. No matter how many hours of sleep I do or don’t get I am exhausted. I am talking about the hit by a train and then run over by a semi, beaten to death while having the flu kind of exhausted. Every day. I am always nauseous to some degree and live off of ginger ale and saltines. I have to think about every move I make so it will (hopefully) not cause me to have a tremor. I get hot flashes so severe I look like my face and neck have been blistered by the sun. I can’t shake someone’s hand or give a person I love a hug. I can’t bake, write, use a knife, use scissors, knit, go to concerts, sleep, cook a meal or even find a comfortable position to sit or lay down in. Even typing this blog post has caused me an immense amount of agony. The list seems to never end. And bonus… any recounting of my days and/or pain sounds legitimately awful and also a tad pathetic to me which just makes it that much worse.

I often think about this question, when everything causes pain, what do you do? The only thing I can come up with is, you do your best. Some days, I cannot do much more than breathe, but then other days I get dressed and look like an actual human woman instead of an extra on “The Walking Dead.” I try my best to have hope for a future when there will be something that will make me feel better and I will be able to return to school and seek out my dreams. I am optimistic for a life where happiness replaces pain. One day, I will get over the anger of what happened to me and move on to what I can have instead of what I do not. Until then, I will try my best. To quote my all-time favorite heroine Scarlett O’Hara: “After all, tomorrow is another day!”