Category: Stories of Hope

By Samantha Barrett, Special Events Coordinator

Getting closer to the wedding date, Samantha updates everyone on some of the tips she has learned through the wedding planning process with CRPS. What questions do you have for Samantha? She can answer them in the next edition!

Hello friends! It’s been a while since I’ve update you on the wedding chronicles. We are just about 3 months out from the big day (I know, crazy, right)? But I’m getting extremely excited, although a tad overwhelmed.

Recently, my health hasn’t been the best it could be. My CRPS has gone into occasional flares, but the EDS and POTS have been what is really affecting me. But the EDS contributes to CRPS pain for me and then the POTS just makes it so I’m down for the count. I’m really glad I started planning actively so early in the process. I’ve had quite a few days when I had intended to do so much, but was able to do so little. It is a gentle reminder that we have to pace ourselves and roll with the punches. Some days will be bad. That’s when you have to listen to your body.

Since the last time I blogged, we’ve had a lot go on. Our best man dropped out of the wedding, but was replaced with a best woman. Our amazing photographer also did a super fun engagement picture session for us. We’ve had suits and dresses ordered, started on the floral arrangements (which I’ll get to below), almost completely finished our centerpieces, received our invitations, and we’ve been getting all of the other décor items and accessories in stages. It’s all really coming together!

Our engagement photography session was fantastic. I found an amazing photographer whom is all about making sure I’m not straining myself. Plus, she lets you do whatever you feel is natural, so most of our pictures are just how my fiance and I are as a whole. It was so much fun. She even found a location that looked like it was right out of Beauty and the Beast (which is my wedding theme after all). We did a lot of pictures sitting down so I could rest, since I had been flaring around that time and had just recovered from a dislocated hip. It was incredible to have someone that was so willing to work with my limitations. She’s now on the top of my recommendation list for everything. This whole day was just really special and so much fun. I can’t wait to see what she does for the wedding. She even came up with a plan for if I get a pain surge the day of the wedding! Woohoo!

The floral arrangements are really a fun element. My maid of honor is the one that is actually doing my flower arrangements. Because of my dye allergy and the sensitivity of my hands, we decided to go with fake flowers. I was extremely hesitant about this decision, as fake flowers can look, well, fake! But Michael’s Craft Store has some extremely realistic flowers that even the petals feels real (but the stems don’t). They are coming out beautifully. Even better, now I don’t have to try to preserve fresh flowers as a memento. Since my main flower is a rose, now I don’t have to worry about de-thorning either. It’s a win all around. I can’t wait to share these floral arrangements with you.

So, what is my current source of stress due to CRPS? Thinking about trying to write out all the invitation envelopes and finishing the centerpieces. While my hands aren’t too bad, my back and arms start to burn if I lean forward for too long (i.e. to write out anything with a pen and paper). My mom and my maid of honor have volunteered to help me with this so I don’t have to do too many, but it is frustrating. There are so many envelopes to fill out, but I’m working on accepting help. It’s the only way it’ll get done without sending me into a full flare after all. For my centerpieces, I have to paint some stands and get some appliques printed out with the Cricut. I know my grandfather will be the one doing the Cricut, but it’s the application that stresses me. Much like the writing, any kind of leaning forward for extended periods of time, or extending my arm out for extended periods of time, sends me into terrible flares (and I tend to dislocate because of all of the extending). I think my fiancé will have to put the appliques on our teapots. I can at least spray paint the stands. Other than that, I just need to arrange some flowers for inside of the teapots and I’ll be good to go!

We did some cake testing about a month ago. My fiancé hates cake so he’s a fun one to bring. Granted, I’m just as fun with all of my restrictions (no red dye, gluten intolerant, lactose intolerant, etc.). We had wanted to bring my grandmother to our cake testing, but unfortunately, she was too sick to come, which was a blessing in disguise since her wheelchair wouldn’t have fit. I’m lucky that I was using my cane and not my wheelchair, because there is no way I would have been able to fit in to the testing area with my own wheelchair. What a reminder that you must check EVERYWHERE. Even if they say they are handicap accessible, some places do the bare minimum. I realized in college how many places do the bare minimum. I almost started something I wanted to call Sammie’s Challenge, where business owners or higher ups have to navigate their entire place of business in a wheelchair without assistance. I always thought that would open their minds and eyes a little more. I think I saw that someone recently started something like this. I hope they go far with this. But, I digress.

I’m currently working on customizing a cane for the big day. I feel as though the zebra print may take away from some of the classier details. Let me know if you think I should do a cane customization tutorial or share links to where I found a cane that fit!

I recently booked my honeymoon trip as well. How on earth I’m going to get through the full wedding, then flying, and then a ton of walking at theme parks is beyond me. You know how when you really want something, you pull the strength from deep inside of you and pay the price later? I have a strong feeling that’s what’s going to happen. But I’m strategizing. I’m going to start with the theme park that has the most walking. I’m also making dining reservations so there are designated times when I have to sit and rest. My fiancé is one of the best people I could take a trip with in terms of resting. He makes sure that I don’t overdo it when we just go out to do errands. I imagine this is going to be interesting.

So, now that we’re a little closer to the end of this process, let me give you some more tips. Whether you’re the bride, groom, maid of honor/best man, or parent of the bride/groom, you can make these tips your own.

1. Start planning and buying things as soon as you can. This will save you time and energy as the big day gets closer. It’ll also seem like less of a financial hit since you’ll be doing everything in stages.
2. Take breaks. If your health is doing poorly, focus on getting yourself better. Nothing is worth overdoing it, especially because it could take away from your special day.
3. Make a realistic budget. Remember, a budget is an estimate. Don’t go over what you can handle. The day is about you and your soon to be husband or wife, not about how many flowers you had, how extravagant things were, or anything else. Do what feels best for YOU!
4. Make changes based on how/where your CRPS affects you. Have it in your feet? Ladies, avoid the heals and opts for cute flats or sneakers (or whatever you can tolerate). Make time to sit (even if you have to schedule it), and online shop as much as possible. Have it in your hands? If you can’t grasp flowers, consider a pinned corsage on your dress. Can’t wear a ring? Find a necklace that you can put a ring on or a necklace that will symbolize your marriage.
5. Call everywhere to see if they are handicap accessible, especially in the areas that you will need to access. You don’t want any unpleasant surprises.
6. Accept help! Have an envelope writing party and have snacks or food for everyone that helps out. Don’t be afraid to ask for help either. The worst they can say is no! This applies to every part of your wedding.
7. Find vendors that will work with you and that will accommodate your needs. You are paying them for their services, don’t settle!
8. Find bridesmaid dresses and suits with plenty of time to spare. Everyone has at least one flaky bridesmaid/groomsman that will wait until the last second to get what they need to get.
9. If you’re going on a honeymoon, try to find somewhere that you think your body can handle the best. Can’t handle the feeling of sand on a beach? Don’t do a beach resort. Can’t have anyone bump you? Don’t pick a popular tourist destination during tourist season.

Written by Laura Lustig, PhD for the RSDSA blog.

Originally Titled: “Chronic Pain And Family Responsiveness: Stories Of Courage In The Face Of Unimagined Change.”

There are many types of chronic pain experienced by people all over the world, many of which have been well recognized and have treatment regimens that are prescribed regularly by doctors and allied professionals. To categorize the pain of Reflex Sympathetic Dystrophy (alternately referred to as Complex Regional Pain Syndrome) as chronic pain is almost a disservice.

To begin with, people suffering from this syndrome go through indescribable pain that can strike without warning and become unmanageable. Then, there is the agony of waiting for someone to diagnose it correctly because, unlike so many other types of chronic pain, it is not commonly recognized until it grows in intensity. Even then, it is still not well understood.

All of this as preamble is known to those of you out there who are experiencing the pain, and to your families who are suffering the mental anguish of going from pillar-to-post trying to alleviate your family member’s pain.  My hope is that in reading my thoughts and suggestions, you will respond and tell your stories, your actions toward relief and your questions, through me to others like you and thus become a support team for each other. Your stories should not be silent and unnoticed; they should reach the ears of medical professionals and researchers.

But to any who have not experienced personally the anguish described above, those of you who are friends, relatives, neighbors, or associates of these families- my hope is that this article will better acquaint you with what they are going through in the hopes you find incentive for assisting them in whatever ways you can offer. Even the common family duties of everyday life are disturbed by the disabling effects of this syndrome.

The Role of Caregivers: The term “caregiver” has a multitude of meanings. It can range from a service provider taking care of a disabled person, to a parent, a spouse, a sibling, a son or daughter, or other relative taking care of the individual affected with CRPS. Each of these roles are different by the nature of the category and each can vary within the same category for individual families. It has life-changing consequences. Complicating things even more, many members of the same family not in a caretaking role may have their lives changed because of their relationships within the family.

So, how does one describe the duties of a caregiver in these situations? The best I can come up with is to compare them to the normative roles of individual family members and the variations that may occur in those roles.

For example, a mother and father of a fortunate child who is healthy of mind and body are expected to nurture and train their child for increasingly independent life as he/she grows. Along the way, their needs as spouses and individuals can be attended to with increasing confidence that they will, one day, launch Junior and move onto, or continue, their own interests and relationship needs. This paradigm cannot help but be hindered when a child has more dependency and critical care needs. The question is: can a parent of this child eventually reach normative life functions? Can the child eventually find ways of becoming independent? There is no general or right answer to this question.  Each family has to find their own way through the morass they encounter. It is all too common to deal with day-to-day issues and let time go by without thinking further about the future until it is upon you. But what is important is the recognition that your roles have been modified so that better planning can occur.

At this point, I would like to further identify myself and the role I took as a caregiver in my own family, because I faced a similar question as I raised my physically and mentally challenged son. I went day-by-day, doing everything I could for him: researching his condition, talking to doctors, going to clinics in the hope of finding diverse professionals who might lend their composite expertise for the medical, psychological, social and educational needs of my son. I think that in the back of my mind, not fully consciously thought out, I was looking toward a future in which he could be successfully launched toward a life of his own, and not remain in my caregiving role for the rest of my life. I have other children, and I always wonder if I gave each of them enough attention, not to mention my husband. Eventually, I was fortunate enough for my son to be moved to a life of his own, certainly not an independent one – he will never achieve that – but, at least a life in which he has contentment, work, and home life that approaches the normative environment I wanted for him.

I went through agony, crises, family troubles, and roadblocks within the social and educational environment that may, in some ways, be similar to what many of you are going through. At some point, I found myself asking who I was before and what I became after my experiences with my son Jesse. I wonder how many of you have thought about that. If anyone wishes to learn more about my story, my book “Attics of the Mind: The Story of Mother and Her Special Son,”  is available online or at Amazon.com. I was fortunate, also, to have 2 older children who love their brother and have taken courageous roles in helping him. Their story is also available online. But, I could not have done it alone, which is why I emphasize the importance to each of you of reaching each other and some helping professionals along the way. Your solutions are not only medical; they are psychological, social, educational, and ongoing. There is always one more thing to do, I found, and you may also.

But what of the role taken by a spouse? One hesitates to call this a caretaker role, though it may end up that way. In the so-called normative environment, one marries with the idea that there will be love, family, a division of tasks in the everyday life, a companion to share the good times and bad times. The readjustment becomes obvious when one spouse is hit with CRPS. How much adjustment is dependent on the state of the illness, and more than this, the understandings between the spouses of their responsibilities to each other. This is an even more difficult readjustment than one borne out of a natural caregiving responsibility of parent to child. In each case, the spouses will face a complete change in roles. Yet here again, the backdrop of attempts on the part of both spouses to approximate as normal an environment as possible is most likely to result in more harmony between them.

In some cases, it is a sibling who may find him or herself in the role of caregiver? Here, a whole life may be unintentionally upended. He or she may have the least expectation of anything in the natural course of events to prepare for this new role. It leaves many more questions than answers. For example, where does a new companion fit in; what of the expectations for career building and family development? How much does one continue moving in these directions when the needs of the CRPS brother or sister is suffering? If there are several siblings involved, the complications can cause rifts between them. Who takes the major role; is it divided equally; are there explanations one or more siblings give for taking a lesser role? Again, no easy answers.

I haven’t mentioned the reverse order of child to parent. In the ordinary course of events, children are expected to take some responsibility for providing a basis of helping their aging parent who may become ill. There are many agencies and living arrangements which can be found to provide care for the aged, but not so many for the parent who may not be elderly but who is suffering from CRPS. This condition may exhaust or go beyond the abilities of nursing care to know what to do or to provide the amount of care needed.

So, in all of these cases, what does it mean to do a good job. A caregiver can be thrown off his or her balance when confronted with the extraordinary problems involved. Even the best of care may seem insufficient – with attendant guilt feelings, loss of confidence, and eventually, despair.

In all of these cases, it is vitally important that people in the caregiver role find other supportive help. Talking to a therapist and other professionals, intimate friends and medical people can help create better balanced judgment and relief. It is vitally important that caregivers not become stressed out to the point that their own health is affected.

I know I have raised many more questions than answers. But, I feel confident that in each family there are strengths that can be found and resources to use. Each of you out there has your own story. Many of you can help with the solutions you have found, the resources you know of, and the empathy you can lend to each other. Together much can be accomplished; alone the troubles you face can feel impenetrable.

If you would like to share your story or have any suggestions for others involved with caregiving, please email RSDSA at [email protected]

Interview Conducted by Samantha Barrett for the RSDSA blog.

Judi Riley is one of our fabulous Facebook community members. When we got word of her books with the incredible images that accompanied them, we knew we had to interview her. Judi, who has had CRPS since May of 2009, is an author, illustrator, graphic designer, artist, and mom who is conquering life with RSD or CRPS. After an introductions, Judi and I exchanged emails for this interview. Say “Aloha” to Judi, everyone!

Samantha Barrett: You write and illustrate children’s books, which is amazing! What inspired you to do that?

Judi Riley: I’ve always been a storyteller and for as long as I can remember, I have doodled pictures to go with my stories. My dad always encouraged me to publish my stories with my art.

SB: Out of all of the books that you have written/illustrated, which is your favorite and why?

JR: It is very tough to pick just one favorite! Every book is like creating and birthing a child, and reminds me of a period in my life. Right now, I am deep in a creative bubble while I work on a series of three books and I am completely in love with them.

SB: If you had unlimited resources, what would you write and illustrate a book about?

JR: What a luxury it would be to dedicate all of my time to just writing and illustrating! 98% of my writing happens away from my desk… through my life experiences, reflection and a quiet space where I dream up the unimaginable. With unlimited resources, I would travel around the world with my 9 year old (who is also a writer and artist, and who hasn’t left Hawaii since he was 2) and we would dream up stories based on our adventure. We would make an excellent writing team!

SB: That is so sweet. Does RSD/CRPS affect your ability to write/illustrate? How have you adapted?

JR: After a bilateral crush injury to both arms in 2009, I lost sensation in my fingers (my hands were like wood) and my arms were perpetually burning up with nerve pain, which I later learned was RSD. My fine motor skills were compromised and I didn’t think I would ever be able to paint again. Like many RSD warriors, I was misdiagnosed for several years, and consequently didn’t get the supports or treatment I needed to break the pain cycle. I didn’t sleep for more than an hour a night and I was in a constant brain fog. It was challenging to think, and thus impossible to write. Writing and art had always been my oasis and the further I fell into a dark abyss of chronic nerve pain, the further I fell away from my art and anything light. It is impossible to imagine RSD pain unless you have lived it. If you have ever needed a root canal, then you have tasted nerve pain, but you can never know RSD nerve pain. Imagine the sore you feel from cold hitting your exposed tooth root, but crank it up even higher. Like 10 times higher. Now imagine it is in your limbs and it never stops. Never. RSD never stops. Never. Not one second. I bring up the root canal analogy because my pre-RSD self used to think that it was the worst pain imaginable. Recently, my post-RSD self went to the dentist for a root canal and fell asleep in the dentist chair during a three hour procedure. It was nothing. A mosquito in my ear. The kind of continuous nerve pain that RSD brings is the kind of pain that breaks you. On the McGill pain scale, RSD pain is rated above childbirth. How can you function with pain that high? You can’t. I nearly gave up many times. In those sleep-deprived, darkest nights of abysmal, searing hot nerve pain, it would hurt to move. It hurt to breathe. During those nights. I would sometimes lie very still on the cool floor with my arms folded across my chest, and in that coffin position. I would imagine leaving my body. One of my favorite things has always been the warmth of the sun, but I remember absolutely hating the sun back then. The rising sun of a new day meant that not only did I have to move my body, but I also needed to carry the weight of it through my life. RSD very nearly took all of me. Did I write? Did I illustrate? Brushing my teeth was a huge accomplishment. But I refused to give up, and I was determined to find a cure. I didn’t listen to the doctors who told me there was nothing more that could be done. Instead, I searched for the right doctor and eventually found one who changed my life. After listening to my symptoms, she sat next to me with a posture that suggested she needed to break the worst news possible. I’ll never forget that day or how she looked at me. Until that moment, I had been free falling for 3 unimaginable years in a dark abyss of infinite pan and then with a dull thud, in that moment she gave me a diagnosis. I touched the bottom. Finally, someone knew what was wrong with me. Not only did she give my disease a name, but she also prepared me for the weight of what the news was going to bring to my life. Finding out that I had an incurable, degenerative disease of my sympathetic nervous system was devastating, but not nearly as devastating as knowing that I had suffered unnecessarily for 3 long years because I was misdiagnosed. A string of doctors had told me over and over that there was nothing more that could be done, when in fact there was lots to be done. This new physician cracked open a world of possibilities and was absolutely determined to bring my pain to a manageable level. RSD is nicknamed the suicide disease. A few months after we met, when I was doing infinitely better, she told me that right before she met me, she lost an RSD patient to suicide. When I first walked into her office, she knew as soon as she saw me that I had RSD and she was going to make sure that this disease wouldn’t take me. I never told her I was suicidal. But she knew. I did not want end my life, but I no longer wanted to be in my body. You cannot carry continuous, immeasurable pain without wanting to leave your body, and she knew that. She reached into the abyss, grabbed on, and wouldn’t let go. She surrounded me with a life force of supports. She taught me that nerves have memory, that we could retrain mine, and that it was going to be the hardest work of my life. She taught me that the sympathetic nervous system by its very nature is designed to override every treatment. Over months and months, she dragged me from the darkness and into the light. Before RSD, I was fearless and had always lived without boundaries. I was a free spirit and knew I could do anything I set my mind to doing. After RSD, I had to relearn the idea of living without boundaries. The physician taught me to dig deep to find ways to adapt to my new life. I researched many, many ways to find new ways of doing things that used to be so easy for me. Many technologies exist today that help me write and illustrate, which brings me to the next question…

SB: Wow! Can you tell us about your new book?

JR: My new book is called “The Original MerKINS: A Field Journal.” It is a book that almost didn’t happen. It definitely could not have happened without the healers and doctors who have kept me in the light these last few years. (You’ll find some of them on the attached dedication page). For the last four years, I have been learning how to illustrate using my computer instead of painting. I am very tactile and love mixing and blending colors, and watching my art come to life. Drawing on a black tablet with my wooden hands and staring into a computer monitor was nothing compared to painting. But, I learned to love it, thanks to an unexpected gift from a friend on Kaua’i. Last year, she gifted me a Great Dane puppy. I lost my Dane a few years ago and didn’t think I could handle training a puppy, but she knew more than I did that I needed him. One of the best tips I ever received (from the doctor who gave me the RSD diagnosis) was to keep in motion. It is too easy to stay in the pain posture (hunched inward, shoulders rolled forward, chin down) which brings on more pain. She encouraged me to walk with purpose with my shoulders back and chin up, and to swing my arms consciously left, right, left. I went from fearlessly windsurfing giant ocean waves in 30 knots of wind to… walking. Exciting, right? Until last year, I avoided the beach because it made me sad and reminded me of my life before RSD. My new puppy got me excited about walking, but walking around town on the hard surfaced sidewalks set my feet on fire. So, I ended up taking him to the beach where I could walk barefoot in the warm, soft sand. We walk and swim about 5 miles a day now. I mention the walking because it was on our daily beach walks that I found inspiration for my new book. Walking is still painful, but the beach has become a safe haven where I can push through the pain, clear my head, and feel the sun, which I am once again madly in love with. My new book is about a “Merologist” who falls into an underwater world called “MerKingdom,” where she meets a series of sea friends (MerKINS) who are animals with mermaid tails, like “MerIggy,” a pig with a mertail, and “MerLar Bear,” a polar bear with a mertail. The book is actually the story of my battle with RSD and all of the characters are based on real people in my life. The first MerKIN who we meet is MerLaLa, a mertailed koala, who is really my friend Lady LaLa, who helped save my life when she gifted me my new puppy. And since I know you will ask, MerCess, a brightly colored horse who draws with her octopus-like tentacled mane, is me. Disappearing into MerKingdom is what has brought me the greatest healing. There have been many times that I wanted to give up. I still have what I call Lost Days, days when the pain is too great to do much of anything. Drawing and typing can flare up my RSD, but sometimes RSD pain comes out of nowhere without any triggers at all. MerKingdom gave me a place to disappear into and took my mind away from the pain. Dreaming up MerKINS gave me something interesting to draw and transformed drawing on a boring black tablet into a magical experience. I chose to format the book in a shabby chic, scrapbook style so the imperfections of my drawings would be hidden and seem intentional. I chose to tell the story in a journal style, so that I could work on any pages at any time, even in an RSD brain fog, because I didn’t need to remember where I left off. It is easily the most challenging book I have ever made, but it is also very easily the best work of my life. I received my advanced printed copy of my new book just last week and as I turned each page, I was absolutely overwhelmed with the magnitude of what I had done. I create the impossible. If I can do this, you can do anything.

SB: That is absolutely incredible. I love that you used it to tell your story. How have you used your talent to cope with CRPS related pain?

JR: My greatest gifts have always been my imagination, my creativity, my humor, and my stubbornness. I draw on all of these gifts to battle RSD. I definitely lean on my ability to think out of  the box to figure out how to do things that RSD makes challenging. I am also hugely curious. I research and I listen to advice, but ultimately, I figure out what works for me. I will try anything, even if it seems crazy. Well, maybe, especially if it seems crazy. Another tip one of my healers taught me to do was smile, even if I am having a Lost Day. The chemicals released into your bloodstream during a fake smile are identical to authentic smiles. I remember hating on life so much, but smiling anyway. The absurdity of it! But, I tried it and it actually worked. Day after day. Stupid arm swinging walking and fake smiling. For me, I needed to draw upon all of my talents to heal my spirit and create enough light to see me through my darkest of days, and return me to the place of knowing I can do anything. We are all limitless.

SB: What would you say to someone who stopped pursuing their interests because of CRPS?

JR: There is a great deal of mourning that needs to be done because the life you had before RSD is gone. It’s a death of sorts. But, that doesn’t mean that you cannot have a full life. RSD is just ONE part of you. It is not the entirety of your Self. You may never have another pain-free day, but the line between manageable pain and unbearable pain is a very, very fine line. Once you have crossed over that manageable pain line and RSD is screaming, the greatest challenge is in knowing that manageable pain is attainable again. It’s important to keep a pain journal because you will need to be reminded of your gifts and all of the things that you can do when your pain is turned down. Every single day, even on Lost Days, you must find one thing that you are really good at so that other parts of you can shine. You must also create wins because RSD brings many, many losses. Whether the win is real or an illusion, you must find a win that gives you happy chemicals to keep fighting. For me, I am freakishly good at Scrabble and so I play online on my phone. Winning is a mindset. Small victories lead to big victories.  Winning at Scrabble leads to getting a book done. No matter how challenging, you also need to find a way to reclaim your hobbies. I can no longer draw with a pen, but I can draw with a tablet. Sometimes, I draw the same line over and over again because the picture in my head and the one that is coming out of my hand are entirely disconnected. But, if I keep at it, I will come close. And some days, that needs to be good enough because it beats not drawing at all. Believing that you can do it is more than half of the battle. I believe that one day I will be able to windsurf again. It’s a crazy belief, but it gives me hope, and hope keeps me in the light.

SB: What advice would you give to someone that wanted to write and/or illustrate children’s books?

JR: What are you waiting for? Just do it. It is really just that simple. Don’t research the thousand and one ways to make a book. Write your book and when it is done, it will take on a life of its own. Your Creative self cannot be bogged down by worries like how do you print a book, and how do you market a book. Since I publish my own books, many people contact me and ask me how to print a book. I’ve learned to ask them one question: have you written your book? In most cases, they have not. Instead of writing their book, they’re trying to figure out how to get an ISBN# for a book that doesn’t even exist. Just do it. It’s truly that simple. Many people have ideas for kids books. An idea is nothing. I have new ideas for kids books all day long0 when I brush my teeth in the morning, when I am climbing into my truck, when I am washing my dishes. It is very easy to come up with ideas for kids books. Finish a book takes blood. It takes all of you. Don’t tell someone who has written a book that you have an idea for a book. Write. Your. Book.

SB: Where can we find your books?

My new book is getting printed right now! It is setting sail from Hong Kong on November 17 and will arrive in Hawaii in December. You will eventually be able to find it at books stores, but for now you can order a first edition, signed, hardcover through my IloveMerKINS.com website. You can also download my ebooks on iTunes and at Amazon, just search for “Judi Riley.” My best selling book is called, “When I Am Quiet on Maui.” Thank you for giving me feathers for my artist wings, which brings me to AerKINS (book two in my new series) another scrapbook styled journal about the power of dreams and features animals with wings, like AerOth, a winged sloth, and AerGer, a winged tiger.

SB: That sounds so cute. Thank you for interviewing with us. Any last words for the RSDSA community?

JR: First, do not listen to the doctors who say there is nothing left to be done. Find a different doctor. Second, be flexible. What works today may stop working without reason. Right now, my treatment plan includes regular stellate ganglion blocks, a cocktail of medications, exercise, pilates, and lots of love. Third, smile every day, even if it is fake. Claw onto your sense of humor and never let it go because you will need it on your darkest days. Fourth, cry. Sometimes, you need to release all of that you are carrying. It doesn’t make you weak. Finally, know that you are limitless. And your very best days are still ahead of you.

 

Thank you, Judi, for taking the time to be interviewed. Judi just announced all of her books are $0.99 for the month of November in the  iTunes store, so be sure to pick them up while you can!

By Matthew for the RSDSA blog.

When a person is diagnosed with CRPS, often times it can be a confusing, complex time. Read what Matthew has gained from his diagnosis and what he hopes for your future.

My name is Matthew. I’m a 19-year-old male from Melbourne, Australia.  I was just recently diagnosed with stage 3 Complex Regional Pain Syndrome, but to most people’s surprise, it was an absolute relief. My injury started 5 years ago as a 14-year-old kid playing basketball. I clashed knees with an opposing player, which I had done hundreds of times before- everyone in sport has. All the usual symptoms of that type of injury came on and lasted weeks: swelling, bruising, dull ache, and redness. 4 months later, after not healing, I saw a sports doctor who sent me to get an MRI. The MRI revealed the conclusion of bone bruising. I was prescribed an anti-inflammatory medication and to see a physio[therapist]. After many months of continuously increasing pain and dozens of specialists telling me that the pain was “in my head,” I went to see my amazing general practitioner and asked to be referred to a reputable orthopedic surgeon.

Several weeks later, I saw the surgeon. The surgeon studied my latest MRI and told me that I had cracked articular cartilage and that I needed surgery sooner rather than later. I took his word for and got with it. He also gave me a cortisone injection to try and settle the pain down before the operation, which did nothing but make my pain worse! The surgery date eventually came and went as planned. Post-surgery, the surgeon told me that I had the worst articular cartilage he’d seen and it may never heal. Time goes by; 3 months, then 6 months. The pain only continued to worsen. I had been back seen the surgeon several times. He did several more cortisone injections. I also had experimental PRP injections, known as plasma rich platelets. Yup, you guessed it- all his attempts to settle the pain just aggravated it more.

By this time, I reached 17-years-old and decided I did not think it was ever going to go away, so I went back to trade school in constant, agonizing pain. I put on my happy face and continued on. Another 18 months went by. By this point, I couldn’t function, hadn’t been to school in a year, and finally decided I needed to see another surgeon or something. I went back to my same general practitioner, who actually told me he believed I had CRPS due to my symptoms. After further discussion, he sent me off to a world renowned knee surgeon for confirmation of diagnosis. He confirmed it and I was referred to the pain management specialist clinic at Epworth to see a CRPS expert. I couldn’t have been happier. Of course, I have a long, long way to go, but finally I can see light at the end of the tunnel! Finally, someone believes me. It’s not in my head! I have had two appointments with my pain specialist. He’s amazing. We tried a couple of medications with not much luck. I think we are going to try a sympathetic block next, fingers crossed!

I had times during the past 5 years, as a young fella, that I hoped I wouldn’t wake up because of the excruciating pain I live in. CRPS is terrible at the best of times, let alone being young and at school, having mates and teachers that don’t believe you. I never thought I’d get a diagnosis or anyone to believe that I’m in real, physical pain. But it happened, it happened for me so it can happen for you, too. I know I’m not out of the woods yet, not by a long shot, but I’m on the right path. I’m in the right direction! I’m more than satisfied with my new pain management specialists, so I have faith we’ll be able to get it somewhat under control. I hope I can return to my life. We all know what CRPS can take away from you. I’ve heard it compared to bleeding out slowly from a gunshot wound, and in many ways that is true. While you’re not physically dying, it slowly, but surely takes away your will to live and enjoy life. Coming from a young man, that’s a huge dramatic statement. Anyone that has been through this will understand. On the flip side, my will to live and enjoy life is only growing by the day. Every time I read another story of hope, I gain a little more faith that I will get better.

I’ve already talked about all the down sides of CRPS and it’d be perfectly understandable to think: “How would anyone be able to find a positive out of such a gloomy situation?” Well, my friends, CRPS has given me appreciation for life; the fresh air I breathe, the birds singing in the morning, it makes you think about all the people in the world not appreciating their lives. Most importantly it gave me perspective. The perspective that makes me happy to be alive each day, be able to breathe fresh air, even eat a sweet juicy apple. It’s the kind of perspective that makes you not worry about anything that isn’t worth worrying about. Every second you spend arguing/yelling/getting involved in drama is a second less you’ll get to do what you want with the days that God has allocated you. This is my story. I really hope it gives someone, even one person, some hope that one day they can get on the right path and head towards a happy pain free life.

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.

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.

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.