The Art of Providing Care for an RSD-er

I have had the pleasure and challenge of providing skilled home health care for someone with RSD for the past three years. For those of you who may be unaware of what RSD is, as I was, it is Reflex Sympathetic Dystrophy. It is in short a chronic, debilitating pain disorder for which there is no cure. After learning of what RSD was, then came the question, how do I treat it?

Healthcare for an RSD-er is complicated because they have unique challenges that impede care by traditional means. Routine things such as taking blood pressure, drawing labs by venipuncture, traditional massage and therapy can all be detrimental to someone with RSD. Another challenge is that the general mindset of the healthcare community is to be curative. If there is a problem our aim is to fix it. There needs to be a shift in focus to maintaining or sustaining quality of life if we are unable to improve it. Patients with terminal conditions receive palliative care, but people with chronic conditions don’t always have that option.

One important aspect of providing care for someone with RSD is to be patient and listen. Some members of the healthcare community have a reputation for being bullies. We can rush in, look at a chart instead of the person in front of us, half listen to what they say and offer generic textbook treatment all in about fifteen minutes. What I have learned is that listening to a patient and digging deeper into a patient’s story by asking questions will generally lead to a solution or option for better care. There needs to be a willingness to step outside of the box of traditional treatment and consider new ideas.

I am fortunate that the one person that I have cared for with RSD is Mary Jane Gonzales. She is an advocate in the RSD community and an advocate for her own care. Her desire to educate and spread awareness of this disease is commendable and admirable. I have become a better nurse because I am her nurse. 

by Inger Daniels

RSD Interview - with Elizabeth Alviani

HOW AND WHEN DID YOU GET RSD?

It was 1993. I was at work and fell down one step, which broke my leg and foot. Compound fractures and surgery right away.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I can no longer do the things I used to do. I had to stop working. I’m in a wheelchair now. The pain is unbearable. I stay home a lot.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Yes. My husband, Geno, has been there for me through it all. My parents have been there, too.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Yes. I feel God chose this path for me for a reason and now it’s my job to walk the path and believe God knows best. He will lead me

HOW HAVE YOU REINVENTED YOURSELF?

I do crafts and play video games. I am in a group at the YMCA, which I just joined. It’s a pool class called "twinges in the hinges". The rule is:  if it hurts, don’t do it. I’m with older adults and they are great. Most of us are in pain, so we understand each other.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Yes, it has strengthened my faith. I do believe that my cat Winston Churchill was God’s gift to me. I found her two years after I got hurt. She was two weeks old. I worked with her and made her strong. In return, she is my rock. She is now eighteen years old. I have other pets that I look to for comfort, too. They look to me, also. Additionally, I have talked to student doctors and taught them about RSD/CRPS.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want them to know how RSD/CRPS takes our lives, and the burn and hurt we go through on a daily basis. We need more awareness to get more treatments and, maybe, get a cure.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

I have gone through countless surgeries and blocks. I have two SCS systems implanted. I have had all different kinds of medications, PT, and more. I have had RSD for twenty years now. It is never ending. I will be getting ketamine infusion done. We need more. We suffer long and hard. Please help us.

RSD Interview - With Dannel Leon

HOW AND WHEN DID YOU GET RSD?

On May 10, 2011, I had Ulnar Nerve Entrapment surgery and I developed RSD about a week after the surgery.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I was unable to use my hand to lift items or to cut my own food, and the pain was terrible. I wasn’t diagnosed until two months later and I felt my doctor and physical therapist should have listened to me. I was made to believe the pain couldn’t be that bad and I wasn’t working hard enough in physical therapy. It was hard to allow my family members to cut up my food, shop for my groceries and help me get dressed. I developed severe depression for over a year.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I do have a wonderful, loving support system. My husband has been so great and supportive. My son and daughter-in-love asked me to stay with them while I had various treatments for pain. Their love and assistance helped me accept my disease and grow stronger.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I definitely grew closer to God and He showed me how to help others. Facebook groups have been a great source of information and support. When I read other RSDers' posts, I realize my disease is milder and God has given me great compassion for others who struggle. I understand the verse, “give thanks in all circumstances; for this is God's will for you in Christ Jesus.” 1Thessalonians 5:18. I now look for the rainbows after the storms.

HOW HAVE YOU REINVENTED YOURSELF?

I am more patient with myself now. I give myself permission to nap and rest. I learned new ways to do things with one hand. I don’t feel guilty when I have to decline invitations or shopping trips. My health and abilities are limited, so I’ve learned to put my health first and then I can save my energy. I have other health problems in addition to RSD, so I’ve learned to prioritize.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

My family has grown closer together. I learned my doctors were not in charge and had put my health at risk. I had to fire them and select new doctors. I deserve good medical treatment and respect. I have learned to research my medical treatments and work with my new doctors as a partner. I have also developed some close, wonderful relationships with several RSDers and I thank God for this.

WHAT THINGS DO YOU MISS THE MOST?

I miss my energy, as well as, freedom from pain and limitations with my hand. I am independent and now I must rely on my support system for many things.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

This disease is real and, when doctors and physical therapists ignore your symptoms, it adds to the pain. There are many doctors, nurses and physical therapists in the medical field that have no knowledge about RSD. They assume you cannot be sick and you are making up the symptoms. You have to be your own advocate and fight for treatments. If I had cancer, no one would doubt the disease, but I have RSD and some people do doubt it.

The Hastening of the Wasting

Having been asked a number of times about the pain of muscle atrophy, I decided to answer in a blog post in the hope of helping others. Bearing in mind - I am not a clinician, this is my experience and assessment of muscle atrophy.

1. First, there's muscle atrophy that goes on beneath the surface that is not visible to the human eye, which I call weakening. 

2. Then there's the flab/ rippled, Sharpe look, which I call wasting - denoting a process.

3. Then there's the gaping hole, which I call loss - because it's finally gone.

The first stage is discomfort, for sure.

The second stage has an added sensation of movement that feels like rolling or rippling.

The third stage is a deeper, more intense pain; like bone on bone or metal to metal. The picture it evokes in my mind is that of a car when the breaks wear out.

Just as everyone's RSD pain is different, I think that may be true of atrophy also. For example, I think the more frail one is, the more painful it could be.

I would welcome your thoughts, whether clinical or practical.

Very truly yours,

An expert patient

Interview with Author Barby Ingle

1(a). What inspired you to write your first book related to pain issues? In 2002, I was in a minor car accident and diagnosed with whiplash. Willing to do anything to get out of pain, I went into the hospital in November 2003 to have my first rib taken out to make room for my nerves and blood flow. Earlier that year I had also undergone a shoulder surgery. Then in 2004, I had to undergo an additional rib resection surgery. Since about a month after the accident, I attended physical therapy, which was excruciating and seemed to make things worse. Finally, in May of 2005, I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and look at me. The thought of being examined again was frightening. After finding so little information out there and having so many doctors, who did not know about RDS, try to treat me, I realized that I am the one who has to teach myself and my caretakers. While teaching them, I have learned so much myself that I was inspired to write RSD in Me, to share the tools I wish I had in my starting stages of RSD. I want others fighting the same battle to have the whole story and know they are not alone. In my research, I have found very little literature that tells the whole story; I know how important it is to have the big picture. 1(b). And what inspired you to write every book thereafter? After I achieved remission, I wanted to tell the most hopeful part of my story to let others know that there should be hope and that there is help! That is when I shared the remission story in my second book; ReMission Possible. My third book came about because a patient asked me to explain how I walked through the health system and got the help I needed. It is a behind the scenes look into access to healthcare issues; The Pain Code. I also developed a workbook to go with the book, as a tool patients can use to walk through the minefield of the health system successfully. 2(a). How many books have you written, thus far? I've written seven, but only four of those are on RSD/Pain. My works include: The Cheerleading Coaches Handbook – how to coach cheerleading and dance Cheerleader; The American Icon - contributor The Wisdom of Ingle; Fall Down and Get Up in Half a day RSD in Me! A Guide To Living With RSD And Other Chronic Pain Conditions Remission Possible; Yours If You Choose To Accept It The Pain Code; Walking Through The Minefield Of The Health System The Pain Code; Journal And Workbook 2(b). And which is your favorite? My favorite is yet to come. It is Aunt Barby Hurts. I am working on this project with my brother and it is about having a relationship with children that is strong and healthy even if you have chronic pain. My brother is also a chronic pain patient and I am closest to his son, because he took the time to teach him from birth how to interact with me, so it hurts the least. So I am currently working on the children’s book; Aunt Barby Hurts and a book about keeping intimate relations strong with my husband; Real Love and Sex for a Chronic Pain Patient and Their Partner. I am also working on a follow up book to The Wisdom of Ingle with my father based on life lessons we have learned and want to pass on to future family generations and the world; The Wisdom of Ingle; All I ask is you try your best. Once I am done with these I will have reached my goal of being a part of 10 books being published and will probably end my publishing career. 3(a). What would be an average day in your life?  Wake up at 9am. Take my medications. Brush my teeth. Spend a few hours with my husband. Eat brunch. Answer some emails. Take a few phone calls. Send Ken off to work. Take a nap. Answer some more emails. Eat dinner. Watch a movie or some TV. And head to bed. I don’t do much physically at all. I try to avoid injuries and traumas at all costs. And, if it is a rainy day, I spend most of the day, if not all, in bed. I try to travel out of town to do events only once every 2 months to help save my energy and keep me feeling good. And I try to do one awareness event a month when I am home. It could be an online event or something going on here in Arizona. 3(b). And what would be an average day of the foundation? The Power of Pain Foundation (POPF) has over 100 volunteers; board members, ambassadors, event volunteers, and executive staff. Each of us does our part to keep the foundation going. We do everything from our mentor program, setting up conferences, sending out resources packets and speaking publically on legislative issues involving access to healthcare. With each of us doing our part, it takes the pressure off the rest of us. It is great to work with the POPF team to put a big spotlight on pain. 4. In this “alternate life”, what do you most like doing; writing books, writing grants, public speaking, etc (?)  If I could have back, what I thought my lifetime career would be, I would be coaching collegiate cheerleading and dance and still running my former company; Cheertec, Inc. 5. Is it safe to say that there’s a parallel between your pre-RSD life and your post-RSD life, in the sense that you were a cheerleader then and you’re a cheerleader now, just that one was physical and one is not.  There is such a parallel. I remember being 4 years old and my father took me to a professional soccer game where there were cheerleaders on the field. I was hooked! I told him that I would be a cheerleader the rest of my life. He told me that was not possible. After my accident and developing RSD, I thought he may be right. One thing I learned as a cheerleader, the game isn’t over until it’s over. So keep the hope, keep the smile, and keep the spirit. I readjusted my thinking and found another way to be a cheerleader. I am now a mental cheerleader. A cheerleader of hope and inspiration! I will forever be a cheerleader! *\O/* 6. In the same vein, who has been your biggest cheerleader?  I have had three major cheerleaders over the past 11 years. My biggest cheerleader has been my husband who I met 10 years ago. He has been with me every step of the way. Second, is my father who has been there for me since the day I was born, who has hopped on a plane at the drop of a dime to come help me and Ken get through whatever we need help with at the time. And the third is Paula Abdul. She has shown me that you can still live life to the fullest as an RSD patient. If she can do it, so can I, and if I can anyone can. Her calls and messages mean the world to me! 7. Another parallel would be being part of a team, which you were in your cheering/coaching days and you are now with Ken. Do you have any advice or encouragement for others who may not have that benefit? I would say to those who don’t have a great support with their relatives to remember that family is who you make it. If you are not getting the support from your immediate family relatives, turn to other places. Reach out to local church members, support group members, positive people who can help you and encourage you, as needed. But, even with so much support from the family I have and have made, I have come to realize that I am the only one responsible for my health. Search out resources! If I had a resource like the ones available now, this when I started, I would have spent a lot less time, money and frustration working towards remission. Do not lose HOPE. There is research going on and the government is taking notice of this debilitating disease. 8. Tell us about your current condition i.e. how well do the Ketamine boosters work for YOU? Meaning, do they lower your pain or remove it altogether? I am currently in “remission”. I have come in and out of remission since Dec. 2009. The ketamine infusions can bring my pain down to a 0. I am still greatly affected by barometric pressure changes, but instead of a pain level 10 with vomiting and passing out. When the infusions are helping and I am in “remission”, my pain goes up to 2-4 pain levels. Which is nothing to complain about since before infusion therapy I was constantly at 9-10 and the best any treatment option did for me was lower my pain temporarily to a 6. I am very pleased with my progress, remission and long-term outlook. 9. Do you get boosters on a set schedule or an “as needed” basis? I get my boosters on an as needed basis. The shortest between booster infusions has been 2 weeks and the longest has been 4 months. In Dec. 2009, I was fitted for an oral orthotic which lowers brainstem inflammation. That has helped me a lot with balance, coordination issues. It also helps me wear shoes that enclose my feet. Up until then, I was unable to wear shoes for more than a few minutes at a time, even with the infusion therapy. 10. What new projects do you have coming up in the near future that you‘re free to share with us? My two biggest months of the year are September for Pain Awareness Month and November for RSD/Diabetes/Neuropathy Awareness Month. This September I will be attending PAINWeek, leading a Pain Pathways Magazine FB chat, speaking at PAIN Summit, featured in the USA Today Chronic Pain supplement, and participating in 2 radio shows. In November, or NERVEmber as I call it, I will be hosting Comic Pain Relief show here in AZ and also hosting 30 days of awareness tasks through the Facebook NERVEmber page. I am also scheduled to be on the cover of a national magazine with some special friends of mine. We already shot the photos and I can’t wait for everyone to see this project. Most of all, I like to take on projects that give me extended time to work on them so that I don’t have stress or pressure in my daily life. I also like to complete tasks versus ongoing projects, so I take on projects that are short term and I can better handle them, making them more successful. Thank you, Barby, for sharing with us and giving us a closer look into your life. I've enjoyed hearing your story of remission, the hope of all chronic pain sufferers. Thank you for all the good work being done by the Power of Pain Foundation, and much success to you in future endeavors.

Interview with Author and Designer Deeann Elizabeth Pavlick

1. What inspired you to write your first book?
I always wanted to be a writer when I was young and have been writing since I was a child, but I only published after I was diagnosed with RSD and saw a pain management specialist who told me, after reading my logs, that I had the ability to write. Because of the RSD, I wrote small books, as I was able, on the subjects or projects that were within my knowledge or expertise. My inspiration is why I write. My artistic quality is why I write so many different genres.

2. How many books have you written, thus far? And which is/are your favorite?
I have written eight books and three magazines, so far. The children’s books are my favorite as they are very sweet and get a good response from the parents and grandparents. Plus, the children love them, which makes my day.

3. Do you have a set writing schedule or is it just as you feel inspired?
I write/create as I’m inspired; whenever the feeling strikes me. 

4. What prompted you to start designing jewelry?
I have been designing since I was very young. I went to school for Interior Decorating when I was twenty-five. From there, I owned several shops and designed in all of my shops. Jewelry is just one of the items I design. 

5. Where do you find the time for all that you do? Or what would be an average day in your life?
While running my businesses, most of my life, it was a daily routine. But, now, there is no set time or average number of hours a day. I suffer from RSD, Fibromyalgia and AFib of the heart, so my day and what I do works around all my ailments.

6. Compare your pre-RSD personality to your post-RSD personality.
My personality before RSD was vibrant, always smiling, happy, and on the go all the time. After my RSD, it changed my personality and my life. I was in pain 24/7, trying to live my life with the disease and all the emotions that come with it. My Fibro got worse and so did my heart problem. I wasn't able to live the life I was used to, which put me into depression. So, today, I am not the same person, but I am still living my dreams, just not as fast as I had hoped.


Thank you, Deeann. It's been a pleasure talking with you and learning how things came about in your life that led you to this point in time. You are certainly multi-talented and a good example of perseverance. Congratulations on all your success and blessings in your future endeavors.

UNBLOCKED

Praise the Lord!

After 3 1/2 months, I now understand what was wrong with me that caused the "heaviness" and  the "blogger's block". My spirit  had been crushed!!!

Proverbs 15:13

English Standard Version (ESV)

¹³ A glad heart makes a cheerful face,
    but by sorrow of heart the spirit is crushed.

The wounds of  people, through word or deed...experienced all too commonly by RSDers. 

 Something we can all relate to, as others don't understand our situation.

I'm glad the weight has finally been lifted, and I'm glad we have each other for support.

Love to all,

Jane

• <<

Blogger's Block

Yes, it's true; I have had "Blogger's Block"! I'm ashamed to say that I haven't blogged at all in three whole months. I know it's not "Writer's Block" because I just wrote a new book. Yet, for some reason, I couldn't write a simple post! I have ruled out depression because I laugh a lot and enjoy my life (despite the pain and confinement). But, though not depressed, there seems to be a heaviness over impending things, both physical and other.

I

Some of our relationships

Are only for a season

And good health can be lost to us

For whatever reason

Currently, impending loss

Is causing me distress

Not so much depression

But more a heaviness

I write and work

I laugh and play

But some things

I just cannot say

I'm working through

With faith and prayer

And may, in time,

Be free to share

But, as for now,

I will distract

And shift my focus

From the lack,

Continuing to read and write

And scrap booking all through the night.

RSD INTERVIEW #50 - WITH WENDY SWIFT

HOW AND WHEN DID YOU GET RSD?

On November 22, 2010, I had ACL reconstructive surgery from a torn ACL and two fractures, and I developed RSD immediately following surgery.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I was very active. I worked out, I worked two jobs and volunteered at church, on top of being a wife and a mother. Now I am in bed about eighteen hours a day. I can walk but I use a wheelchair the majority of the day. I have lost family and friends, and felt the emotional burn from RSD.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Yes, my husband and two daughters. I do receive outside help occasionally.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Without my faith, I would not be able to survive this disease. I went through a very dark period where I thought that God had abandoned me, and was punishing me. I was suicidal and wanted to give up many times. But He has seen me through that dark time and, incredibly, I have been able to find peace in this disease and have the will to carry on. Without my faith, I would not be here today.

HOW HAVE YOU REINVENTED YOURSELF?

I used to be very impatient. Now, I am more patient. I used to have the need to be in control of everything, I now realize I have no control over any of this and am now accepting of that fact. I feel I am a more peaceful person at this time in my life. I can finally sit still, and not by choice.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Yes, I am closer to God. It has, also, given me and my family a deeper level of compassion for one another.

WHAT THINGS DO YOU MISS THE MOST?

Getting on my knees and praying every morning,.exercising, and participating in the outside world, in general.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I would want people to know that this disease is very misunderstood and unfairly judged by many. It rips away so much and the constant excruciating pain is exhausting. This is not just chronic pain, it is chronic pain at the very highest level. I would ask them to care more about educating themselves about RSD to have the support and understanding we so desperately need.

RSD INTERVIEW #48 - WITH MARIANNE ELDER

HOW AND WHEN DID YOU GET RSD?
Six years ago, I got RSD. I went outside to cut my roses. The sun was going down and my mother was helping me cut 27 rose bushes and, when I turned the curve to cut the last rose bush, my left ankle rolled on the outside of the curve and it rolled and it snapped in half. As soon as I heard it break, all at the same time, I collapsed with a lot of pain. My mother helped me into the house and we called my husband from work and told him to take me to the hospital.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I no longer could get up and move around anymore. My leg was turning purple, blue and red, and it was burning like there was a dagger stuck in it. I was even using a walker for five years. My husband had to do everything for me. My children were helping me out, as well, and my youngest son was very, young when I got injured. I no longer could get around like I used to. When I make plans, I can’t always keep them like I used to. As time went by, I noticed things were changing. I could no longer drink my coffee at a standard. 176°. I had to have it at 135°. I could no longer eat ice cream and I could no longer have cold IVs in my arm or any ice on me at all because it felt like fire. I always have to elevate my feet on a stack of pillows and, when sleeping, I have to have body pillows all around me to prop my arms and legs up. Anything that touches me feels very cold, yet, it feels like I’m on fire.

I’ve been in remission for two years, which was such a blessing. However, the remission recently ended and life has become harder again.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, my husband, my kids and my friends help me. I have even had a house keeper.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I am a true Christian. I believe that Jesus has a part in all of this and I do believe that Jesus is getting me through all of this every single day.

HOW HAVE YOU REINVENTED YOURSELF.?
If I did not have Jane, I would struggle more with this disease. She has taught me a lot about it and how to get through it. Below are some ways I am changing:

1. When I make plans with my husband and kids, things can change in the blink of an eye and we will have to go home.

2. I was on narcotics for pain for five years and I have been free of them for two years now.

3. I am now looking for ways to help me homeopathically, rather than using prescription drugs..

4. I try to be patient, but it’s hard having people help me and it’s hard having patience when people do things differently than I do.

5. Now that I get judged by the way I look, I no longer judge other people according to the way they look.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I would say yes, something good has come out of this. I trust in Jesus more. I have more patience with my children and my husband, and they have more patience with me.

WHAT THINGS DO YOU MISS THE MOST?
There is a lot that I miss. I miss being able to make plans and stick with them. I miss being able to eat ice cream anytime I want. I miss being able to get up and move around and clean my house and take care of my kids like I used to. I miss doing things on my own.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want the general public to know “do not judge the book by it's cover”. I am in pain a lot of the time and most of the time I don’t show that I'm in pain. I want the hospitals to be very well equipped by knowing about RSD. I need the nurses to know about RSD, as I have run into more nurses that do not know what RSD is.

WHAT HAVE I LEARNED ABOUT THIS DISEASE?
I have learned that RSD truly can bring you down and you have to fight like hell to come back up.

RSD Interview #45 - With Maria Guerra

HOW AND WHEN DID YOU GET RSD? 

I just spent seven years of schooling towards Criminal Justice & Criminology, graduating Magna Cum Laude. I was involved in martial arts. I was sending applications out and just starting to get through the application process. The economy, at that time, was starting to pick up in Michigan. I graduated at the time of the 2010 economic failure, right when Michigan became the FIRST state in the US to go bankrupt. I was still working as a Site Manager at the apartments and also took on a job as a Community Living Instructor. This employment would be ok until something else broke.

I just came home from working a 12 hr shift and I was getting ready to hang letters on apartment doors at midnight. A tire from a “semi” had knocked the mail boxes completely out, and I was notifying everyone that they needed to pick up their mail at the post office the next day. As I was stepping down the steps in front of my apartment, I twisted my ankle and fell to the concrete screaming. I could not get up. The neighbor shouted obscenities at me from his window. I wanted to yell “help”, but I could only scream in pain. My friend heard me and came to my rescue. I went to the ER 24 hrs later and they said I just twisted the ankle. They wrapped it and put me on crutches. The swelling in my ankle felt the size of three footballs, and the pain was so intense that I literally wanted to get a chainsaw and saw the ankle off.

Two months passed and l was still not walking, and was in horrific pain. The doctor sent me for an MRI and, at that point, I still could not get the swelling down. We got the results of the MRI and it read that I had ripped one of the ligaments completely off of my ankle bone. Then the doctor told me that he suspected RSD. I asked him “Will I ever walk again? What does RSD mean?” In the back of my head, I was thinking of all the years I have worked so hard for my degree and of sacrifices that I made. “What is RSD? What does this mean for me?” I asked. Basically, the doctor shrugged his shoulders and walked out of the room. I stood up on my crutches and took a step towards the door and collapsed. The office staff had to call a friend to come pick me up. I had no idea where I was going from here. See, there was one more twist to this problem. I had no insurance and I had to find a specialist that would give treatment without insurance.

I started to call around and no physician would treat me, let alone see me for a consultation. Without insurance, making cash payment was not acceptable. I tried to go back to work on crutches but that did not work well. I could not sue my employer at the apartments because I already knew the stairs were broken and I continued to use them. Also, the apartments are privately owned and attorneys I spoke with hesitated suing a privately owned apartment, citing the inability to collect an award.

Anyway, I spent a few months literally living in a recliner, with my best friend caring for me. At first, I thought he helped me out of guilt. We had been close friends for twenty years and I didn’t want him to help me out of guilt, but I could not help myself and I had nowhere else to turn. I was getting ready to move into my own place but now I couldn’t even do that. I had been living in my best friend's front room and we were working on finishing my apartment for occupancy. Now, here I was with CRPS.

How was I going to ask this man to take care of me? How could I do this? How was I going to allow this? He had his own life to live. Was it fair to ask Neil to do this? I had no insurance; everything was crashing in on me. I had just spent seven years of my life in school to be a cop. Was this all gone? I can NOT WALK! I was in martial arts, and I hurt myself stepping off a stair! I am so confused. What happened? This MAKES NO SENSE!!!! OH, THAT’S RIGHT, I FORGOT: RSD/CRPS!!! Then I started to look online for some help with RSD support, looking for someone to help me with insurance and medical. Better yet, let’s be real. I was at the point of suicide. YES, that is what I said. I was truly desperate and, when I called the RSDSA that day, Jim Broatch saved my life!

I was in so much pain from my ankle, and depression was setting in. I had no home of my own. I lost my apartment and my job. Now, my best friend was helping me out of guilt because he did not fix the stairs! I could see it in his eyes. He thought I was holding him responsible. And, you know what? At first, I think I was. Not anymore, though. That man has gone far and beyond helping me.
Let me share one more thing here that is the pun of it all, you may not know what a Community Living Instructor is. My job was to teach others with disabilities how to live in society. Now I have CRPS and my team of doctors is passing me along because they do not know what to do with me. No one wants to take responsibility. I can’t find anyone to help me with my eyes burning. They even went as far as telling me to talk to my dentist.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE? 

CRPS has turned, twisted, ripped off, and even (gone as far as) thrown away pieces of my life. I think, most of all, it has been a blessing in disguise. This disease has made me stop and re-examine my life. The one thing about any disease is that it does not give you a choice about changing your life; your life will change. The choice comes with what you will do with it. Specific ways it has affected my life:

 Emotional roller coaster—many highs and lows

 Laying on bed sheets--skin sensitivity to many things touching me

 Crutches--mobility constraints

 Vertigo--Car rides have become very difficult for me, at times, as the vibrations from the car ride hurt so bad that I think I might go mad

 Sometimes walking on tile feels like I am walking on glass

 Have to wear gloves for high skin sensitivity / tenderness

 Ask for help for things; I never needed help before CRPS.

 Don’t eat—eating habits changed drastically.

DO YOU HAVE A GOOD SUPPORT SYSTEM? 

I have a good friend, Neil, that supports me. And a few friends on FB support me. My children don’t know much about the disease but, if I need them, they will come and be here for me. I have just started to get united with a Christian Church and involved in a bible study group. I try to help educate people in CRPS Awareness that live in the village where I live. People still call it a village but the place is growing so fast that I really don’t think that we qualify as a village, anymore. I am also involved with online support groups and have developed several good friends over the past year that have helped me through some rough times.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA? 

If it was not for CRPS, I would not be back with the Almighty God. I thank God for this disease because my faith is getting stronger every day because of it. That fall has brought me to our Lord Jesus Christ, our Savior. I guess you can say the CRPS has brought me closer to the Lord, and the Lord has helped me accept the CRPS. God has given me the strength to get through’ the pain of the day many times. I cannot imagine successfully making it through some nights without the love of God. HE is my rock. HE is my strength.

HOW HAVE YOU REINVENTED YOURSELF? 

Jane helped me get to the next step of reinventing myself by encouraging me to answer these questions. I did not want to answer the questions but, all-in-all, the questions were therapeutic. They helped me to understand myself a little better and helped me move ahead and take some baby steps forward. It is hard to reinvent yourself; especially, when everything has been ripped from you and you really have no idea what to do with yourself or where to start.

If Jane was not my friend, I would not have answered the questions. Yet, this was therapeutic for me. I am glad that she helped me move to the next step. The next time a friend asks you if you want to answer some questions, please think about it. Don’t think that I did it right off the bat; I did not. It took me like a month to start, but Jane did not give up easily. She can be persistent and I love her as a very close friend. That is the kind of friend you want on your side. Not the ones that will let you lay on the roadside. Just think about that!

When Jane asked me to answer these questions I had to set them aside, and I cried. I realized it has been fifteen months since my accident and I still don’t know who I am. My past life has been taken from me and everything is gone. CRPS has changed me into someone I don’t recognize. It is not just what am I going to do with this person! What can I do? I am not sure what my limitations are. This disease is unpredictable. I have no stability in my life at this time. That is exactly it. This disease is catastrophic, inside and out!

I am working on reinventing myself and it takes time. It is a very slow process. Well, I just cannot tell you what it does to us, because it changes us completely. We don’t even know who we are anymore, only that we are not who we were. Otherwise, we would not have to reinvent ourselves now, would we? And I would not be answering these questions. I do think everyone should have to go through something at least once in their life, though not necessarily this disease. Then, maybe we would all appreciate life itself, even more.

HAS ANYTHING GOOD COME FROM THIS TRIAL? 

It has brought me to a place of change: to change myself to be a better person within myself, and become one within the universe and humanity.

There are so many things in life we take for granted. Little things are easy to take for granted; such as, picking up a fork, brushing your teeth, taking that step, putting on your pants, watching TV, reading a book, typing, going to the store by yourself, showering without it being a struggle, having your privacy in your bathroom, being able to go see your loved one, or just to pick up that phone to tell them you love them, maybe to get those words out of your mouth, maybe the privacy to be alone.

WHAT THINGS DO YOU MISS THE MOST? 

I miss being able to do multiple tasks and not think twice about it. The best way to describe this is best written & spoken by Christine Miserandino.

http://www.youtube.com/watch?v=jn5IBsm49Rk

I suppose the best way I can have someone come close to understanding a portion of what we CRPSer’s go through is: think of someone you know who has lost their mobility. Then think about having to depend upon others for most everything that you would normally just do. Independence would be the best way to sum up what you would miss the most.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE? 

https://www.facebook.com/InspirationalStoriesForCrpsRsd

I encourage anyone to participate in this project if you are in any way afflicted with CRPS. Those that are not, I encourage educating yourselves about the disease by reading some of these stories.

The general public must learn empathy, compassion, humility. NOTHING is an issue until it strikes you, a loved one, good friend, or family member. We are all members of the human race. That includes all colors, creeds, races, and physical abilities. We are our brother’s keeper and must learn to not only practice it, but live by it. Respect one another and do not judge. We are all created equal with different attributes and weaknesses.

WHAT HAVE I LEARNED FROM THIS DISEASE?

How cold the world has really become. I was surprised to find out how many places are really not equipped to handle handicapped people. I live in a small village with limited businesses of any sort. The local handicapped population is either very small or very sheltered. Businesses, such as restaurants, have very lean handicap facilities. My handicap has caused me to isolate myself even more because the larger cities are thirty minutes away and that was too far for me to sit in a car and ride. Automobile vibrations put me in horrific pain and I would cry the entire ride. I have developed increased empathy for handicapped persons to a degree I never realized I did not have.

Consider educating yourself and your families and pass the word. It’s ok to be afraid because we are, too. We don’t understand all either, but we all can learn together and not one case is the same. Try not to compare us because what works for one may not work for another.

RSD Interview #47 - With Christine Beausoleil

HOW AND WHEN DID YOU GET RSD?

I was injured at work on April 29, 1999 when I struck my right knee on a counter support (hard). The whole unit heard it. After three days of no improvement, I requested medical attention. X-rays were done and they found a tumor encapsulated in the fibular head (an incidental finding, having nothing to do with the injury, I didn’t have any symptoms from the tumor).

On March 5^th, 2002, I was re-injured at work, this time taking my chance of working away from me. There have been multiple surgeries and I also broke my knee, simply by standing on it. Ultimately, I received a letter from my employer, firing me for not being able to perform my duties!! What a slap in the face! It was totally legal, as Florida is a "work at will" state, and you can be fired for absolutely nothing.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

My passion, other than my girls, was to be a nurse-from the time I could talk. I can no longer work as a nurse, or anything, because of the symptoms of the disease and the side effects of the medications that I need to take. Friends don’t understand. Most have drifted away, leaving me alone and out of the loop. Now I only go out for medical appointments, testing, etc. I’ve missed weddings, funerals, family gatherings, etc., due to flares, no wheelchair access, and hospitalizations.

Because I can’t work, my income has been lowered significantly, affecting how I pay bills, take care of my girls' gifts for Christmas and birthdays, college, etc. My Mom moved into my basement to be my daytime caregiver, as well as taking care of my girls (mostly, driving us everywhere).

DO YOU HAVE A GOOD SUPPORT SYSTEM?

My Mom and girls have been great. The girls were only four and six when I was first injured. The “me” now is the only one my youngest remembers. Kaitlyn, at the age of four, packed her toys and stuffed animals, took her pillow and stood by my front door, waiting for someone to come get her because I “wasn’t fun anymore”! She hates this story...now, it’s funny; then, not so much. Kaitlyn and Meaghan, both, stayed home instead of going away to college, so they could “take care” of me. I’ve had a hard time with Paul. He has been very immature and selfish during this time. It’s taken many arguments and counseling to have him realize what he’s done to the family. Things with him are coming around.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Until two years ago, I was going to Mass weekly. It became almost impossible to get me out of the house in the wheelchair (and back in), as well as causing increased pain by doing so. Even with the ramp we put in, I don’t go out unless it’s medical. Locally, Mass is on TV six days a week and, if I’m awake, I’m watching it.

Sleeping problems make everything difficult. I tend to be awake all night long, and sleep during the day. During the week, the girls are in school, so I don’t feel guilty about sleeping.
My Mom tries taking me out after my appointments (doing anything from eating to shopping), usually without much luck. I just don’t have it in me - too tired or in pain. She pushes, sometimes giving me no choice; telling me her sugar is too low and she needs to eat ASAP, she has to pick up something at a store, pay a bill, you name it. She’s good!

HOW HAVE YOU REINVENTED YOURSELF?

Up until a couple of years ago, I would crochet & do crafts for people. My hands became a problem, but I was able to teach the girls some of my stuff and how I cook (usually, with no recipes). My youngest really took to cooking. It’s very calming.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

I was able to be at home with my girls after school instead of them having to go to daycare. It was nice to be there to help with homework and cook good/healthy meals for them. Our house became “the house” to go to for sleep-overs and such, especially, after we put the pool in. I figured it would help out with my physical therapy. I loved teaching the girls to swim, too. I learned fairly early. I wanted them to be confident around the water.

WHAT THINGS DO YOU MISS THE MOST?

I miss working, as sad as that is. I’d wanted to be a nurse from the time I was about five. I had to put myself through school because my parents didn’t have the money to do so. I’ve worked in hospitals, doctors’ offices, and even a county jail (which was pretty cool). I considered teaching to be a big part of nursing. If the patient understood why they were sick or had to be on a certain type of diet, they could stay healthier and would need less visits/calls to the office or hospital. In one office, I would do group teaching about different conditions that patients and families could attend. Some of the battles patients have are with family telling them “you can eat this!”, “just one drink won’t hurt you”, etc. Sometimes helping one person directly helps a whole family indirectly.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

RSD can’t be “caught". The rashes, discolorations, etc., won’t rub off on you. You may not see the areas that are painful, so PLEASE ask before touching us!! My Mom still rubs against me, either with her body or clothing (she has just recently grabbed my arm). Family and friends have to understand that we don’t want to cancel plans, but sometimes our bodies just can’t deal with being up and out. Between the conditions, meds, and treatments, our body can only deal with so much. Don’t take it personally. Something I've said from day one. I've never asked "why me?". I always said better me, a nurse, to have this than someone who can get lost in the system (doctors, testing, meds, therapy, etc). I knew where to start, who to see, which drugs to ask to try. Others may not, and may even believe the crap of "there's nothing wrong, it's all in your head". My personality is one that I push the docs and don't just sit by and wait. If the doc isn't up to par, he's gone.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

Most of us with RSD/CRPS also have other conditions as well, like Fibromyalgia, Arthritis, Osteoporosis. As much as we would like to go out shopping, to lunch, etc., we just can’t. The medical problems and meds can cause stomach problems, so being out can cause unforeseen problems.
If you want to “do something”, cook something we can reheat when we aren’t feeling well, or offer to do our food shopping, maybe even vacuum. Doing things that take a lot out of us would help us the most.
If you want to really know how we feel, ask, and listen (really listen) to what we say. Nothing can be worse than those who tell me that I have NO idea what pain is, yet, because I’m too young! If you see someone who doesn’t look “disabled” because they can stand or are young, don’t judge right away. You may see us literally dragging ourselves back to the car five minutes later. Remember that not all cancer patients are bald, not everyone in pain is crying out.
I have used smiling, laughing, just “happiness”, as a coping mechanism when I’m out and not feeling well. My family is surely tired of hearing that I’m not feeling well. The “act” gives them hope that I’ll have more good days than I currently have. Mom doesn’t even know when I’m doing it. The happiness sometimes helps improve my mood and makes me truly feel better. It’s always good to try before going anywhere. It can get me through things I’m dreading, like doctor appointments or testing.

Meditation can help with this, too. I’ve used that for years but, when flares start, it’s better to try to sleep through as much as possible. 

The Darkest Night by Wendy Swift

The Darkest Night

How is it - that life can be
so cruel and harsh, yet still set us free?
Reaching and grasping for the beauty within,
hoping and praying this nightmare will end.
The pain takes over your body, spirit and mind.
When do I get off of this endless ride?
All I can do is just hope and pray,
trusting that Jesus will come save the day.
I have prayed for death so many times.
Thinking it's better than life, this prison of mine.
Discrimination comes in every form,
people just don't accept if you’re not the norm.
I now understand that this is God’s way,
of weeding out the ones who weren't real and got in the way.
It was hard to find peace in this torturous time.
But suffering comes with blessings behind.
I often wonder what lies ahead,
when is he coming, my means to an end?
Jesus the way, truth and the life.
The only way to see light in the darkest of night.

Copyright Wendy Swift

RSD Interview #46 - With Denis Stafford

HOW AND WHEN DID YOU GET RSD?

I am a Glazier Trade Man. I was working on an entrance in Carlton Place, Ontario. At 5 to 3, my partner and I fell around 7' to the uneven ground. I broke four metatarsals and my big toe on June 26, 2007.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I haven't worked since, and the CRPS has gotten worse. It went bilateral 2½ years ago. Not as bad in the left leg. Thank God. On the top of my right foot, I developed an ulcer 1½ years ago.Then another beside the one already there. It just kept getting worse till I couldn't handle it, anymore. I had my right leg amputated Feb. 20, 2013. I know it isn't a good idea. My doc talked a long time before I made my decision. It was either that or something worse was going to happen. I could not take it anymore!

DO YOU HAVE A GOOD SUPPORT SYSTEM?

My family and friends, and the people on a few RSD/CRPS sites.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

It does very much.

HOW HAVE YOU REINVENTED YOURSELF?

I haven't.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

No.

WHAT THINGS DO YOU MISS THE MOST?

It might sound crazy to some but I miss working so bad (and the ability to walk). I haven't walked on my right leg since the accident.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

*That it is very hard to diagnose.

*That the doctors need to be educated about it.

*That the pain is just unbearable, at times.

I would not wish this on my worst enemy!! That's how bad it is. Get the doctors educated about this disease, PLEASE!

RSD Interview with Anita Rhoades Henslee

HOW AND WHEN DID YOU GET RSD?

My daughter got RSD in 1987, at age 9, when she knocked an iron off a tall shelf onto her right ankle. My son got RSD in 2000, at age 13, when injured in his right ankle during athletic training. I got RSD in 1995, when I had a car accident and my right ankle was dislocated and torn to the bone.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

It was a nightmare with my children because of the helplessness I felt when they were in pain, and I could do so little to help them. I first ignored what I knew was RSD with me because I was taking care of my son, and I wouldn’t admit that I had RSD.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

The main support system I have is online support groups. My husband does take care of my basic needs when I am unable to do so.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I rely on it to calm me down when I feel overwhelmed, and I try to stay grateful to Him for what He has given me. When my son, who had RSD, died at 18 yrs of age, I relied heavily on my faith to get me through, and still do.Though (technically) my son died in an auto accident, I believe (from witness accounts), that he had a seizure, since he had those occasionally after being diagnosed with RSD. The toxocology report showed no drugs or alcohol in his system. I believe RSD did kill him, just indirectly, and it is not on the death certificate.
The only comfort I can feel in my tremendous grief is knowing he is in Heaven where he is no longer in pain.

HOW HAVE YOU REINVENTED YOURSELF?

When my daughter was diagnosed with RSD, I found out how to be a real advocate for good medical care. That was not easy at that time, when even less was known about RSD. It has helped me to be more assertive in that area for other family members, friends, and myself. I have had to accept not being able to work. Accepting that I was disabled was humiliating and depressing. I have had to find other ways to feel useful, like helping those with RSD and grieving parents. My daughter has been in remission for 22 years, and I spread the word to give hope to others with RSD.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

As a parent seeing and hearing your child scream from unrelenting pain, it is hard to see much good. I would say it has made me more compassionate toward others.

WHAT THINGS DO YOU MISS THE MOST?

I miss being able to walk fast, plant a garden, go to any event I choose. I miss being able to work, of course, and the financial freedom that comes with that.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want them to know that RSD/CRPS is real and that more research needs to be done because a lot more people have this than the general public realizes. I want them to know that if someone they know has this, to give them some of their time, like they would someone with a well-known debilitating disease. A phone call or card, or casserole or short visit can mean so much!

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

Even people who have RSD believe that it is not genetic. The truth is, as far as I know, no research has discovered any gene for RSD, therefore not enabling us to know if there could be a genetic factor or not. I know that my family is not the only one with multiple members having RSD. I have talked to other mothers that have RSD and have a son or daughter or two children, like me, with RSD. The medical community needs to become more aware of this.