Category: RSDS General Info

Written by Kristi Oen, CRPS Conqueror, Founder of P.A.I.N. Help, Vice President of the Naples Holistic Chamber of Commerce

Like many people with CRPS, I have spent most of my life avoiding and hiding because the reality of living with CRPS is just so cruel. Having conquered my CRPS I am happily sharing my journey with you and hope that you have pain-free days again.

Summer in the Chicago Suburbs always meant going to Santa’s Village. I had been a little chicken about certain rides and was going to skip the Tarantula, but my sister and brother teased me and I got the courage to go on the ride that changed my life forever. Mid ride the arm broke and my bucket went sailing forward and fell onto the asphalt 8 feet below. This was the start of the CRPS in my legs, migraines, and my right foot/leg’s numbness. My parents took me to doctors in that first year; however, the general consensus was that the pain was in my head. Age 11 was the first time I thought about committing suicide because the pain was unbearable and no one was listening.

I suffered silently for years, as so many of us do, setting up systems and ways to protect myself from everyday life. When I fractured my ankle in high school, I didn’t understand why everyone wanted me to go to the doctor. The stabbing pain of the fracture was nothing compared to my everyday pain. Life continued and I managed until I got pregnant 12 years ago. It was miserable and awful in a new way. After the C-section, my body spiraled far worse than I could imagine. My CRPS went full body and into my organs wreaking havoc. I was seeing up to seven different doctors a week trying everything for years but only getting worse. Finally, my official diagnosis became CRPS, but no relief. Medications, nerve blocks, etc. just made me worse until I was lying in bed in a dark, quiet room, using a wheelchair, and permanently disabled for almost four years. After refusing the 7-day ketamine coma, the doctors suggested moving south.

So began my journey in Naples, FL. My mother came to take care of me for many months and saw the defeat in me. One day she said, “Kristi can you do one thing for me?” I resisted slightly and then reluctantly asked what? She said, “I want you to look in the mirror every day and say I am getting healthier.” I decided I could do that and I did. As simple as this sounds, it made a difference. I started meditating and focusing on bringing healing into my body. I found a medical device that I started using while meditating and thinking positive thoughts. Within three weeks I was walking, in two months, I was off my $1000 a month of 30 different medications and supplements and off my $1000 a month of therapies. Month after month, things keep getting better including those CRPS symptoms we are so familiar with.

I do not live in constant fear anymore. I was rear ended about six months ago and I didn’t relapse. I was sure I would – but I didn’t! I was sore and had headaches and as my husband likes to say – that’s normal! Another test came in December with a dental appointment. I have had CRPS since I was 10 years old. Teeth cleaning is just about the most painful and agonizing thing I go through-crating thousand needles of pain and waves of fire burning through my body with each touch of a tool. We usually take breaks and modify my teeth cleaning so I can manage it. We didn’t this time, we did the regular cleaning, the bite wing x-rays (which used to be medieval torture to me), the polishing, and the gum probing. I started to cry when my hygienist was working, she stopped, and worried she hurt me. I said no, I don’t feel it. I have never in my life had a teeth cleaning I could remember where it felt like it was just touching the outside of me instead burning through me. I no longer feel like a prisoner to this burning, suicidal disease that held me captive for 33 years.

Every day I keep getting better and better. The picture of me in the wheelchair is from a year and a half ago. I am a CRPS Conqueror and it is my passion to help others conqueror their pain! That’s why I started P.A.I.N. Help, which stands for Pay Attention I Need Help. Remember you are not alone! I understand where you are and where you are going.

PAIN is a four letter word but so is HOPE.

Kristi Oen
630.740.0312
[email protected]
painhelp.kristioen.com
Facebook group: facebook.com/groups/painhelp

By Carolyn McNoldy

My name is Carolyn and I am the brains behind Carolyn’s Cards. I have been battling CRPS for eight years. It started in my left elbow after a surgery.  It took me about two years to be directed to a doctor who actually knew about CRPS and was able to make the diagnosis. Since the original elbow surgery I have had fourteen additional surgeries to help control the pain. I even had a peripheral nerve stimulator implanted in my arm. Then just when I was getting the hang of  living with my CRPS limitations, it spread to my left shoulder and left side of my neck almost three years ago.

I spent six of these eight years not knowing another person with CRPS.  Since CRPS is uncommon it is hard to meet others with it.  About two and a half years ago I finally had the chance to meet someone else which I could truly relate to. There was a walk at a local mall that my family went to with me. It was fantastic to meet other people like me! We talked about doctors, treatments, location of our CRPS in our bodies and a million other things that only people with CRPS could talk about and be able to relate to. We could also discuss CRPS related things without worrying about being judged. My family was also happy to have the opportunity to talk with other caregivers and people with CRPS. Meeting and talking with others has been very therapeutic for all of us, especially me. It has allowed me to fully and completely accept my diagnosis of CRPS and I am now “owning” it proudly. I have become a CRPS Warrior!

I read about the first RSDSA Young Adult Weekend on the RSDSA Facebook page. I was very excited about the chance to spend 3 fun days with others like me. I have been fortunate enough to be able to attend all of the RSDSA Young Adult Weekends, which are now 4 days long. It was during the first weekend that I had the chance to really meet and bond with other young adults with CRPS. After that weekend I did not want our bond to end.  Staying in touch with my new friends was really important to me. Instead of sending the usual email or text I decided to start sending cards. I send these cards every so often, for special occasions such as birthdays or weddings, or if I hear that someone needs a pick me up. It’s always nice to receive something in the mail, especially if that something is not a bill!

The inspiration for sending cards came from my Mom. She sends me cards when I am struggling with my CRPS battle or recovering from surgery or just feeling down. It’s hard to find people who can relate to what you are going through.  The cards always put a smile on my face and brighten my spirit. The cards serve as a reminder that I am not alone and encourage me to keep fighting. I hoped I could do the same thing for my new friends but I was worried that they might find them a little annoying. Was I ever wrong! It turns out that I had nothing to worry about.

It has been almost a year and half since I started sending cards and I continue to hear how much my cards are appreciated, enjoyed, and how they brighten my fellow warrior’s days. I continue to collect names and addresses at each Young Adult Weekend and send out more cards. After hearing about the happiness my cards bring I suggested that it become a program with the RSDSA. I want to be able to reach out to more people with CRPS and brighten their day. It makes me really happy to know I made someone with CRPS happy. I also want to send cards to caregivers of those with CRPS.  Sometimes the journey they take with their loved ones is not easy for them and they need encouragement and smiles too. I am excited and looking forward to sending smiles to even more warriors and their caregivers across the miles!

Please feel free to send your request for a card to be sent out to RSDSA or to [email protected].  I’ll need the person to receive the card’s name, address, and reason for the request. Please know that these addresses and other personal information will be kept confidential.

Written by Roslyn Hamilton for the RSDSA blog.

Are you engaged in pursuing your dreams? Are you committed to your passion in life? I wasn’t – with 50 years on and off with insufficient priority given to my violin. To my horror I have Complex Regional Pain Syndrome (CRPS). Formerly Reflex Sympathetic Dystrophy – RSDS in my left hand which resulted in bent knuckles, limited flexibility and more. While it has improved a lot since splint was taken off, it has a way to go. My story is not medical advice, just in my humble opinion, an opportunity to share alternative choices after the medication gabapentin made it worse.

An inspirational friend said dire things can happen if you are not fulfilling your mission in life. I believe CRPS happened to me due to the severe trauma of breaking forearm, old hyper vigilance, and disassociation from childhood abuse, divorce, and immune issues of Multiple Chemical Sensitivity (MCS). The MCS was due, I believe, was primarily contracted from Johns Hopkins University Tissue Culture Lab radiation and toluene exposure. Genetic Marfanoid Syndrome in my family, I feel is also a factor in structural weakness of collagen for more impact from this injury.

Please see following partial list what has helped since July 4^th, 2018: To date: 38 Massages including ice therapy, ortho-bionomy treatments with K. DeTienne and K. Fuller at Gresham Therapeutic Massage Center, others for osteopathy, 48 Acupuncture sessions at Working Class Acupuncture pocatech.com, 9 Kaiser Physical Therapy sessions, Olympic Gym, 3 of D. Day DC, supplements and organic nutrition, tapping Emotional Freedom Technique, renewed attendance at Al-Anon 12 steps for families and friends of alcoholics. I’m also reducing stress with the support of prayers by friends, Reiki, Tai Chi, Dances of Universal Peace, musical sound baths of Tom Grant Jazz, KBOO bluegrass, Tibetan Singing Bowl and folk song circles.

I find that my affected hand area likes damp and cold compression from wrapping of an old silk shirt, natural fiber or socks cut to fit with ice packs when irritated, which was 24/7. In 2008, I recovered from lower extremity CRPS after feeling burning under the cast for two cracked foot bones. I don’t know why it resolved, just very grateful it did.

Vanity Fair Article quote “Martin Luther King preached six principles of nonviolence, D’Angelo explained, “the Parkland kids were embarking on “No. 4: SUFFERING CAN EDUCATE AND TRANSFORM.” And King singled out a particular kind of suffering: “Unearned suffering is redemptive and has tremendous educational and transforming possibilities.” Ron Block wrote a lovely tune- There is a reason for hard times, as sung by Alison Krauss.  Keep the faith!

Warm wishes for a Happier Healthier Harmonious New Year 2019.

Please consider making a donation to RSDSA today!

Written by Julie Robbins, OTR/L for the RSDSA blog.

I am a passionate, pediatric occupational therapist. I am also an adoring mother of a 7 year old, a loving wife, a minimalist, a book clubber, a political activist, an animated Zumba-er, a Korean language student, a loyal friend and family member, a volunteer, and therefore, a multitasker. A few months ago, I became a patient too.

I was multi-tasking (read: rushing) when I stubbed my middle three toes of my right foot, hard. After an x-ray and MRI and several appointments with just as many healthcare professionals, it turns out I likely fractured my middle toe in two places and developed a rare, nervous system response to this injury of an appendage: chronic regional pain syndrome (CRPS), previously called reflex sympathetic dystrophy (RSD).

The NIH describes CRPS as: “…prolonged severe pain that may be constant. [CRPS] has been described as ‘burning,’ ‘pins and needles’ sensation, or as if someone were squeezing the affected limb” (“Complex Regional Pain Syndrome Factsheet,” 2018). For me, sometimes it felt as if my big toe was being impaled by a razor-sharp metal splinter and at other times it felt as if the right side of my body was being burned by ice. The American RSDHope website states “CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index (“CRPS Overview/Description,” 2017). Further research implies that there is a strong mind-body connection leading to this diagnosis and most of the statistics suggest a negative and undesirable outcome.

I was opportunely diagnosed with CRPS by a lecturing physical therapist during a work conference I happened to attend. Starting the following week, this diagnosis was confirmed by my podiatrist, primary care physician, ankle foot orthopedic surgeon, and my physical therapist.

I had an extremely positive experience with this unusual and undesirable label.

My physical therapist joked that I am a “Type B personality who attacked this diagnosis in a Type A manner.” I think what she meant was that I utilized a variety of traditional and non-traditional techniques in a systematic and diligent manner. I joked that I hired myself for an “unpaid part-time internship” in my own healing.  What I meant is that I dedicated 2-3 hours per day, 7 days per week toward my healing. This required me to minimize most of my roles and responsibilities for about three months. Luckily, I have a stalwart support system in my life, and was provided this necessary latitude.

I tried over 30 different techniques, modalities and supplements to address my healing. I am able to recall each of them with detail because I kept a journal. Although I wrote this journal for my own healing, I am authoring this article to support other people’s healing. Below are many of the techniques that aided in my relatively fast recovery from CRPS.

Healing Technique 1: Journaling

This started as a means to document my feelings. This diagnosis is reputed to be layered with many negative feelings. My journal then transitioned to become a place where I was able to document everything I was trying, my short and long term goals (yes, I wrote functional, meaningful and measurable goals for myself) and my P.T.-prescribed exercises and stretches.

Healing Technique 2: Semantics

Almost a decade ago, I learned about “Hypnobirthing,” a theory and techniques used to facilitate a desired natural child birth. One thing in particular about Hypnobirthing that resonated with me was renaming a physical sensation in a positive way to help manage a physical response (Mongan, 2005). Examples of this in Hypnobirthing include using the word “surge” instead of “contraction” and saying “sensation” instead of “pain.” I successfully used this technique by mirroring this and only using the word “sensation” (even when constantly asked to rate my pain out of 10) instead of “pain,” saying “healing foot” instead of “hurt or injured foot” and informally renaming the entire diagnosis to become Mystery Sensation Syndrome (MSS) instead of Chronic Regional Pain Syndrome.

Healing Technique 3: Mirror Therapy

Before practicing 2-5 minutes of this, there were obvious color changes, differences in girth related to edema, and even texture changes on my healing foot. I sat in a chair and positioned a mirrored, sliding, closet door at my midline. With bare feet, I placed my healing right foot behind the mirror and my left foot in front of it.  I moved my feet in a synchronized manner, plantarflexing and dorsiflexing both feet, etc. While moving my feet, I watched my left foot and its reflection (which looked like my right foot.) After 2-5 minutes of this, the color, girth, and texture of my feet appeared typical and matched each other.

Healing Technique 4: Sensory Input

As I was still waiting for my broken toe to heal, I needed to be gentle with treating my MSS.  As tolerated, I wrapped an ace bandage around my foot, ankle, and lower leg. Other types of sensory input that I used included placing both bare feet in tubs of dried beans and dried rice, wearing different textured socks, rubbing rough and soft textured fabrics on my feet, and placing my healing foot and leg near the jet in a heated pool.

Healing Technique 5: Loading

As soon as my broken middle toe was confirmed as “healed enough” by an orthopedic surgeon, I started weight bearing. At the time, this felt like a challenging recommendation since I had intermittently been using crutches for community mobility and even a wheelchair in the airport and at a museum.

Healing Technique 6: Sensation Tolerance “Raise by One”

When weight bearing, providing sensory input, etc., I was cognizant to only increase my rated “sensation level” by one point. For example, if I rated my “sensation level” at 5/10, then I would only keep my ace wrap on if it remained at a 6/10, but if my sensation level started to raise by two points, to 7/10, I would remove the wrap immediately. Remaining patient with my progress, I consistently kept to this rule of “Raise by One” for each exercise, stretch, and modality that I tried.

Healing Technique 7: Heated Pool

Like many people with this diagnosis, temperature changes were one of my biggest challenges.  Before I was correctly diagnosed, I was very confused why I could not withstand the “pain” of briefly standing in front of my open refrigerator. I went in a heated pool four days per week for 30+ minutes per day.  Initially, I walked with the support of a pool noodle under my arms. I walked forward, backward, sideways, and grapevined.  Eventually, I removed the noodle, transitioned to a shallower part of the pool, and added small jumps and runs, and kicked in different positions while swimming.

Healing Technique 8: Positive Reinforcement

Sticker charts are not just for my son and my pediatric clients at work.  I created a very simple sticker chart and gave myself one “Fantastic!” sticker each time I had an (initially forced) positive mental attitude (PMA) about the outcome of my healing process. After each set of ten stickers, my son (for being such an amazing support) and I earned a special treat, such as pomegranate seeds or getting to sleep in on the weekend.

Healing Technique 9: Meditation

This is proven to be good for all of us, and it is especially important with this diagnosis.  My family and I used Apps, such as “Headspace” (Headspace, Inc., 2018) to meditate together. I also meditated while stretching on land and in the pool.

Healing Technique 10: Visualization

I often closed my eyes to picture my two healthy feet doing all of the things that two healthy feet can do: Zumba, walking A LOT, biking, running, cross country skiing, hiking, and jumping. I also looked at a lot of pictures of women’s feet.

Healing Technique 11: De-stress

I eliminated things in my life that may contribute to stress. This is different for everyone. For me, it turned out that I needed to take a break from listening to current events and from political activism.  I also reduced my over-scheduled social and volunteer calendar.

Healing Technique 12: Laughter

I watched less television and started reading more. However, when I did watch T.V., I chose comedies, such as “Parks and Recreation.” I also chose books with relatively light topics.

Healing Technique 13: Sleep

I re-prioritized sleep. I improved my sleep hygiene and I worked hard to get 8-9 hours of sleep per night.

Healing Technique 14: Acupuncture

I went to a sliding-scale community acupuncture clinic two times per week. The acupuncturist focused on points related directly to my diagnosis, stress, and circulation. I also used a special heated light called a TDP Mineral Therapy Lamp during these sessions which appeared to aide in my healing.

Healing Technique 15: Seamless Socks

I tried a variety of seamless socks and found the ones without compression worked best for me. The brand I wear is called Sierra Socks women’s diabetic 100% cotton ankle turn cuff socks.

Healing Technique 16: Essential Oils

I used a “Stress-Less Blend” oil (melissa, lavender, cedarwood, frankincense with an almond and avocado oil base) everyday on the bottoms of my feet.

Healing Technique 17: Physical Therapy

I did a variety of prescribed stretches and exercises. My P.T. followed my lead and listened closely to my responses to modalities that she tried. It was helpful when she reminded me to pace myself when I overdid my exercises.

Healing Technique 18: TENS Unit

“Transcutaneous electrical nerve stimulation (TENS) is a nonpharmacologic treatment for pain relief. TENS has been used to treat a variety of painful conditions” (DeSantan, et al, 2008).

I used a home unit two times per day for about two weeks. I encircled the CRPS by placing the pads around the areas with the most prominent sensation that day.

I am passionate about many things, including my own and others’ healing. I am starting to regain many of the valuable roles in my life that I had needed to minimize for a while. And now, I have added an additional role: I am a writer.

REFERENCES

American RSDHope (2017). Retrieved from http://www.rsdhope.org/what-is-crps1.html

DeSantan, Josimari M., Walsh, Deirdre M., Vance, Carol, Rakel, Barbara A., Sluka, Kathleen A. (2008). Effectiveness of Transcutaneious Electrical Nerve Stimulation for Treatment of Hyperalgesia and Pain. Curr Rheumatol Rep., 10(6): 492–499. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746624/

Headspace (2017). Retrieved from https://www.headspace.com/headspace-meditation-app

Mongan, M. F. (2005). Hypnobirthing: The Mongan Method: A Natural Approach To a Safe, Easier, More Comfortable Birthing (3rd Edition), 67-72.

National Institute of Neurologic Disorders and Stroke (2018). Retrieved from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet

By Elisa Friedlander

Repost of her Blog on 12/08/18

Talk about the 1990 Americans with Disabilities Act (ADA) has surfaced since the recent death of President Bush who, despite opposition from his staff, signed the ADA into legislation. The civil rights law, prohibiting discrimination against persons with disabilities, moved forward because of the disability advocates who marched, sat, spoke and fought for it in the first place. Still, nearly three decades later, people living with disabilities know the struggle still exists.

I recently caught up via email with a local friend I hadn’t seen in weeks. “I assume you’re doing well, since you’re going to Arizona this weekend,” she wrote. A reasonable assumption, but not quite on point. Things have been hard–really hard–since a recent RSD/CRPS spread which, for now, I’ll sum up with own my initial response: Are you kidding me?!! Despite my body’s turmoil, I wanted to attend to a part of my life separate from the pain, so I made the choice to travel.

We find the cheapest flight available, which means changing planes in LA and no checked luggage, but it’s doable. We head down south to visit family in Arizona, family that is unable to come our way due to their own medical issues. After the first of two short flights, we de-board (my wife, of course, carrying the physical load). Just outside the terminal gate we learn where to go for our transfer, down the short walkway and to the shuttle, easy peasy. Upon arrival, we breathe easy knowing our second plane gate is just ahead.

We walk through the doorway to…what?!! A sense of confusion; imprisonment. Nothing but a huge flight of stairs leading up to our gate; no elevator or escalator in this closed-off space. Just a ridiculous amount of stairs, loads of people who seem to be skipping upward, and our own dropped jaws. Still, I keep looking ahead like it’s an open fridge and I’m waiting for something other than yogurt and condiments to appear.

​Feeling like the world is becoming less and less accessible to me, I realize I have a choice… climb the stairs with the body I inhabit, or miss our connecting flight. Despite the inevitable flare-up it will cause, I choose the stairs. I want nothing more than than a bed right now. What I don’t want is to hang out at the airport in severe pain, surrounded by uncomfortable chairs and human beings.

So, up the stairs we go, and with each step I’m aware that if somebody hadn’t offered to carry our bags, this wouldn’t be an option for us. (My wife’s loaded arms are usually fine, but we’re not about to add stairs into the mix.) More so, I’m aware that this “choice” wouldn’t even exist for many people with disabilities, and it’s entirely possible that I–that any of us–will be included in this minority subgroup one day. And lastly, I’m aware of these thoughts going through my mind:

We should have paid the sixty dollars to check our bags.
Then, No! We have the right to make the choice we did. Our system worked for us; it worked until we ran into a societal barrier.

Should I have gotten a wheelchair? I usually take mine (or use one at the airport).
Then, again, No! As a whole, society fails to recognize that a significant mobility problem does not necessarily equate to wheelchair use. Disability has a range of presentations that require accommodation and need to be taken into consideration.

Should I have asked if there are any stairs I’ll need to use?
No! Information should have been given to us. The fact that there were stairs and no nearby elevators should have been noted, and alternatives should have been offered upon the scheduling of the flight or–at the very least–at the location itself.

​People with disabilities frequently run into these obstacles, and some are so subtle (yet impactful), able-bodied folks usually don’t notice. My recent experience (one of too many to count) highlights the importance of understanding disability as a societal–versus a personal–problem.

Sure, I can’t lift a suitcase (these days I can’t even unzip one without spell-binding pain), and daily living activities (like getting dressed) are increasingly hard, which is undeniably concerning. This means I have a personal responsibility to figure out how to make things work for me. So, I deal with my feelings about it (we should all make space for that); I do some problem-solving and seek out resources; that’s on me. (Well, me and my bank account; being disabled is expensive.)

Once out in the world, however, my body and I are in a relationship with the structures of society. I may be in a ridiculous amount of pain, but I’m only disabled when an extremely heavy door at a public facility lacks an automatic opening. I’m disabled when the pharmacist forgets to put the “easy-open” lid on my medicine bottles, or when the City Council doesn’t make the connection between disability and transportation needs.

When in my wheelchair, I’m disabled if the aisles in a store are too narrow for me to get through. Other days, I’m disabled when I sit in doctor’s offices, classrooms, or public venues which have only plastic or metal chairs, or chairs that have no back or arm support. These are all physical barriers and with them, I’m disabled. Without them I’m enabled, like everyone else, to engage in activities.

In the comfort of our home, within the context of my meaningful relationships, and in my own psycho-spiritual world, disability is personal. Deeply personal. Out there in the world, however, it’s a societal problem, one that requires both access and attitudinal adjustments.

It’s been twenty-eight years since the enactment of the ADA. A lot has been accomplished, and we have much more to do. This is a minuscule peek into my world, but there are millions out there who are entitled to a better society. Let’s prioritize the promotion of awareness and continue advocating for disability rights (aka civil rights) in big ways (think: politics) and small ways (think: talking to your local businesses, public entities, and your friends).

Every one of us eventually will–in one way or another–become disabled, even if only by the natural process of aging. For now, these are steps we can all take.

By Shannon Schildt-Leidig for the RSDSA blog.

Oh my gosh I cannot believe we are coming up to the Holiday season and the end of another year!  This is a time in which I stop and reflect on all that has happened in the past year and to say THANKS to those special people in my life who have stood by me thru thick and thin ~ and believe me there have been some very thin and dark times this year . . . . .

This blog is dedicated to two very special people in my life, my parents John and Mary Ann Schildt who have been my support since I was diagnosed with RSD/CRPS 28 years ago.  I honestly do not know what I could have done without them ~ two of the most amazingly strong and dedicated parents ever.

If someone would have told us the nature of this 28-year journey with RSD, I would not have believed them.  However, that is exactly what we have been on a journey, a journey to many doctors over the years, the journey of various treatments, medications and surgeries all in an unsuccessful attempt to tame this RSD beast.  This journey has not been mine alone but has also affected and impacted the lives of those who love me, especially my parents.  I have watched them both struggle each and every day trying to remain strong for me, their daughter, while I say “I got this, I can handle RSD!” While at night I lie in bed sobbing like a child asking God, “Why? How in the heck do I beat this?”  I cannot show my parents, family and friends that I am struggling.  So each morning I get up and put my fake mask on to show that I am handling this!  Meanwhile my parents are doing the same thing as they do not want to show me just how much RSD has sucker punched their lives too!

As the years have gone by, I have always been able to eke my way thru it ~ thankful for my faith in God and prayer as well as with the support from my family.  However, little did know how much we would be tried and tested as we battle this beast as December 15, 2017 began the day my life with RSD turned into a nightmare of living hell.  We, as a family as well as my doctors decided it was time to explant my pain pump.  While this may have been the right decision it was the worst thing I could have done as an RSD patient as we all know surgery is the torch that lights the wildfire of this RSD beast!

I can honestly say that this past year has been HELL!  There are NO other words I can find to express it ~ I have been to the doctor more times this past year than I can count – I seriously thought I should move a bed in to their office. My doctors struggled to figure the best course of treatment to tame the ferocious RSD animal.  There were treatments and medications, too numerous to count.  Days upon endless days of being down on the couch or in bed because I could not move due to the excruciating intense severe pain of RSD.  Tears shed in the shower because even the water hitting my back and legs caused so much pain, I wanted to spit dirt.  Crying buckets of tears as I knew in the shower my sobs would be hidden by the sound of the fan running.  Too many things I wanted to do yet there was NO way I could ~ my head may have said yes but my body said NO!

Yet all during this time stood two of the strongest people I know, my Mom and Dad.  Even though they were struggling with their own hell as they watched their daughter battling this beast, they could not tame.  So many times, my parents would say, what can I do to help?  My reply, nothing ~ how does that make a daughter feel?  How does that make a parent feel as our parents are supposed to make everything better.  However, with RSD nothing can tame the beast as it rages on its brutality in our bodies day in and day out.  RSD does not care if it is your birthday, if it is Easter or Christmas ~ it rages on as the volcano of hot liquid lava pain rages thru our bodies.  My heart hurts knowing my parents want to help yet there was nothing they can do.  There were days when they thought I could not hear their cries, their heartache, their tears ~ yet I did and that hurt me knowing they were going thru their own RSD Hell.

We are coming up to a year when we went down that slippery slope of surgery ~ and are things better?  I will say jury is still out on that one ~ BUT I will say that I have the best parents in the world ~ they are my rock of Gibraltar, my best friends, my heroes and I am truly thankful and blessed knowing that no matter what my parents have stood by me thru the best of times and the worst of times.  In this season of thanksgiving, I just want to say Thank You to my parents, John and Mary Ann Schildt for being the best parents and friends a daughter could ever ask for ~ I am truly proud to be your daughter!  I love you both!

A Profile in Courage

By John ~ Mary Ann Schildt

The late President John F. Kennedy wrote a book, Profiles in Courage.  There are many individuals who have and can bear that title of a Profile in Courage.  One is our daughter Shannon.  She was a freshman in college majoring in music therapy at Shenandoah University in Winchester.  Life was good.  Then on February 12, 1990 her life, and the lives of our family were forever changed.

Shannon called saying her hand and wrist were hurting.  She was diagnosed with carpal tunnel and subsequent surgery. The doctor said there was more than carpal tunnel.  The pain became worse after surgery as it spread to her other arm and then her two legs.  For a brief time she was unable to walk.  Shannon was tested for Lyme’s disease, lupus, juvenile arthritis and many other conditions.  She was finally diagnosed in April 1990 with Reflex Sympathetic Dystrophy which now goes by the name Complex Regional Pain Syndrome.  Thus began an almost 29-year battle and continuing journey with pain that is like a flaming fire that does not go away.

There were the trips to hospitals in Baltimore, Philadelphia, Cleveland, Georgetown, many more.  For us there were long drives, hours spent in waiting rooms as well as the continued financial costs of treatments, medications and doctor bills as well as surgeries.

But above and beyond the travel, waiting and expense.  There has been the internal pain of watching a daughter suffer, struggling to work, seeing a decrease in her social life because of the ramifications of pain.  We as her parents can do virtually nothing except support her.  We have not walked in Shannon’s shoes nor felt her pain, but as with all parents we have had and continue to experience the pain of seeing our beloved daughter suffer.  She battles on saying, “I am more than my disease.” In our eyes she is a profile in courage.