May, 2016 - RSDSA

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.