13 MYSTERIES I PONDER

 1.  How anyone could endure such pain as RSD.

 2.  How patients often end up teaching doctors about RSD, instead of the other way around.

 3.  How friends or family could abandon a loved one in need.

 4.  How a bed bound person can lay in bed 24/7 quite comfortably - when, normally, laying in  bed too long would tend to cause pain or discomfort.

 5.  How something as grave as being bed bound could actually produce bed humor.

 6.  How most medicines, while helping one problem, will tend to create other problems.

 7.  How a body can suddenly give out with no warning.

 8.  How disease  can go into remission...and, likewise, come out of it.

 9.  How the clinical aspect can make more sense than the practical aspect.

10.  How a body could be so frail.

11.  How spreads can occur without injury or provocation.

12.  How, despite commonalities, each case can be so different.

AND THE NEWEST ONE:

13.  How an RSD-er, unable to swallow/eat, could  be denied nutritional support; how periodic hospital stays (requiring intravenous feedings) don't warrant a feeding tube...how could this be?

*Feel free to contribute your own musings. I would be glad to post them.

RSD Interview #35 - With Richard Kippax

HOW AND WHEN DID YOU GET RSD?
In January 2010, I was walking across the landing and tripped over a laundry basket, landing heavily on my right knee. Instead of going to the hospital to get it checked (which, in hindsight, I should have done), I just took more and more painkillers. After two weeks and the swelling / pain increasing, I went to casualty to get it checked. They x-rayed the knee, found some damage to the knee cap and referred me to the Orthopedic Surgeon. This appointment took a while due to adverse local weather conditions. Upon initial orthopedic appointment, the consultant I was seeing did not want to do anything with the knee and immediately transferred me to his colleague, who specialized in knees. I got sent for more x-rays, ultrasound scan and MRI. The ultrasound scan showed I had a DVT in my calf, so I was unable to do physic, etc, until blood thinning treatment was finished. With increased swelling and limited movement, an ulcer appeared below my knee cap. This stopped the surgeon from being able to do an arthroscopy and manipulation during this time, as I was under a pain doctor for Fibro and Myofacial Pain Syndrome. We noticed that I was losing hair growth on one side of my leg and the skin was discolored. CRPS was diagnosed in May 2010 and pain doctor advised Orthopedic Consultant not to proceed until pain was under control...still waiting.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My right leg is classed as a 'wooden' leg, as it has no movement and there is severe muscle wastage. This limits my mobility and I am now wheelchair bound. Being a tall man, it proves a challenge getting into vehicles with no leg movement. I am unable to work due to pain and spread (to left hand, left ankle and mouth). It’s hard having to assess trips outside of the home- noise, weather, vibration, light etc. There’s a massive sense of loss, looking back on what I used to be able to do with the children. And it has affected my relationship with my wife, who is now my main carer. When in a major flare, I can’t eat what I want or drink what I want, as tongue is very painful, split, etc. Living as an invalid in another room from wife, and having the house adapted to suit my needs, makes the condition seem VERY permanent.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Family and close friends have been wonderful. We aim to educate people around us on CRPS, and my wife has a good support system on Facebook.
GP and Pain Consultant have tried their utmost to help but some of the solutions can not be tried, due to costs or lack of proof of success.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
No

HOW HAVE YOU RE-INVENTED YOURSELF?
I learned the hard way concerning pacing and adapting to situations. I set myself lower goals to reduce disappointment of failure.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I have spent a lot of time with my kids and have watched them grow up to become caring individuals. Also, I understand how disabilities are frustrating to people.

WHAT THINGS DO YOU MISS THE MOST?
Simple everyday tasks, like:
Driving.
Hopping into the shower.
Popping to the shops.
Going to work and socializing.
A good nights sleep!!!!
Not having to think about what to eat.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I have been diagnosed with pain conditions prior to CRPS, but their effects are overshadowed by CRPS. I am still a caring human being and, even if I am chatty, etc, I am still in constant burning pain and very depressed.

RSD Interview #34 - With Paul RSD CRPS

HOW AND WHEN DID YOU GET RSD?

I had a boating accident in 1997. I severed my Achilles Tendon in my left leg, damaged my two knees, fractured three ribs, and damaged my shoulders and both arms. After having my left leg plastered in the wrong position, then having it put in the right position, and having the plaster changed seven times over a period of fifteen weeks (with all of this happening at three different hospitals), all of the trauma caused RSD, which later spread.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

Being an ex-Army man and very much into outdoor activities, it affected my life a great deal in the first couple of years, as I was in a wheelchair and found coming to terms with it very hard. Out of sheer determination, I got myself out of the wheelchair and onto arm crutches. I was slowly coming to terms with having RSD and was enjoying things more. That was until I fell over while using my crutches. Unfortunately, I damaged my shoulder and had an operation. A few months later, while sitting at my computer, I leaned too far to get something and fell again. I naturally put out my hand to stop my fall, only to damage my other shoulder. I then went into the hospital again to have another operation on my left shoulder. This time things did not go well. After the operation, I was in chronic pain, which lasted for months. So later I had to have another operation on the same shoulder. Unfortunately, it did not work out and I was told RSD was now in both shoulders. I was absolutely devastated. But, being a very positive person, I was determined to get on with my life and my love of the great outdoors. It is a hard struggle sometimes but I can do things now, albeit at a slower pace.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Yes. I have a very understanding wife, who is also my Carer, and a few family members who half understand my condition. I have a very good GP who, over the years, has become like a family friend. Anything I need medically, or otherwise helpful, my doctor will get it sorted, if she too thinks it will be beneficial to me.

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

I do not go to church, but I do have a strong faith and have said my prayers every night since I was 14 years old. I always believe there is someone worse off than myself.

HOW HAVE YOU RE-INVENTED YOURSELF?

I have never re-invented myself. I have come to terms with living with RSD, and the things it throws at us.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

It opened up new hobbies. Also, it gave me a lot of time to think, and how best to adapt and get the most out of life while, at the same time, living with RSD. It also spurred me on to help spread the word, and try and help anyone who was in the same position by starting an RSD support group called rsdcrpssociety.

WHAT THINGS DO YOU MISS THE MOST?

In the first years, I missed my job, I missed my fitness and I realized how we take our health for granted. I missed life as I saw it then. I was very angry and depressed. Now I see it, that I do not miss things. I can do most things, but in a slower, and different way. I have learned to adapt and to get on with whatever life throws at me.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

Life does not stop when you are diagnosed with RSD\CRPS. Life is what you make it, no matter what disease you have. Do not ever give in to your disease. Fight it every day. Set your goals and aim for them. Be positive in every way you can. Try to help spread the word about this chronic disease. Do not let RSD\CRPS rule your life. Show the public, your family and friends that you do have a life, and that you are living it the best way you can.

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

LIVING WITH YOUR DISEASE OVER THE YEARS?

Not everyone, thank God, will progressively get worse over many years. Unfortunately, my disease progressed. I had five mini strokes which were mainly caused by the RSD, plus spreads that were caused by having other operations, and the medical team not having enough knowledge about RSD\CRPS. Your quality of life is definitely in their hands when any procedures are carried out. And that is why it is of utmost importance that the medical team know about your illness, so that they take every precaution when carrying out any operations, no matter how big or small. Be aware, and make sure that they are aware, too.

Remember, no matter how bad things get, or how you may be feeling on that day/week, that you have plenty of other days, weeks ,months and years to enjoy your life. And, hopefully, you will find day to day things easier to overcome.

REMEMBER: “POSITIVE THINKING"

If you need any further help, advice, or support, please take a look at the links below:

http://rsdcrpssociety.com

https://www.facebook.com/groups/494693863885243/

Kind regards,

Paul

RSD Interview #33 - With Lori Carlin

HOW AND WHEN DID YOU GET RSD?
Just like any other morning, I got up to my 5am alarm clock to get ready for work, as I worked 6am-2pm as a Certified Nursing Assistant in a nursing facility. I have done this type of occupation since the age of 18. So, as I was doing my everyday duties at my job, it was time to do my repositioning on a resident. So I asked my mother (who is also my co-worker) for assistance. As we were repositioning our resident, I felt this terrible pain rip through my right hand. I immediately reported this to my supervisor. So the next morning, when I returned to work, I reported to my supervisor that my hand was still hurting me very badly. She sent me to the emergency room. They did an x-ray and it showed no break but, since I had such swelling in my knuckles, I was referred to an Orthopedic Surgeon in another town about an hour away. So I came home and scheduled that visit. Then I went and had the MRI and it showed I had tendon tears; confirming that I, indeed, had to have surgery. So the day of my surgery was in late September of 2011. As I came home in a plaster type splint and an Ace bandage for the first 3 days, I just knew something wasn’t right, as the burning in my hand was awful. So, after the 3rd day, I reported back to the surgeon and he then placed my whole right hand in a cast for six weeks. I explained to him, at that time, about the feelings I was having and I was told to take Tylenol. So I did what the doctor said but I still felt this burning sensation, and I told him about this feeling at every weekly visit. Finally, the day came for the cast to be cut off. YAY! So the surgeon came in and said “Here you go. These are your instructions to start therapy and you start today.” I said “Today? Really? OK.” So off to therapy I went, and I tried to do this therapy as much as I could. And I kept telling the therapist the same thing about this feeling and, about the 4th week in, she said to me…“Lori, I think you have RSD. So, to confirm this, we have to send you to our Pain Management doctor who deals with RSD/CRPS.” So I scheduled my appointment and went to see this doctor and he confirmed that I, indeed, had RSD. So he started me on medication and, after about 2 months of medication, and the pain still there and the burning still just blazing through me, he said that he was sending me to a larger clinic that does more invasive procedures for RSD. So I called the doctor he referred me to, went to my consultation with him and he, also, confirmed I had RSD/CRPS. So he got out this little machine and took a temperature reading of my hands and my RSD hand was 3 degrees colder than what I call my "good hand". So the first Ganglion Satellite Block was scheduled. With very little relief from that, he then scheduled me for a second Ganglion Satellite Block and, with little relief from that, our next procedure was the I-Flow Catheter. This is a catheter that is inserted in my back that connects to a medicine ball that I hold in a fanny pack around my waist 24/7. I could turn the medicine off and on, as needed. So, 5 weeks before my wedding, I scheduled this procedure to be done .CRAZY, RIGHT? My husband wanted me to wait until after our wedding but I told him if there was any chance I could be pain free, by God, I’m taking the chance...and I took it!! Well, three weeks into having the catheter in my back, I woke up one morning, not feeling quite right in my face. When I looked in the mirror and saw that the whole right side of my face was drooped, I went straight into panic mode. I called my husband at work, just crying, not knowing what was wrong. He said to calm down and call the doctor; that he, himself, was on his way home. When I called my Pain Management doctor who performed the I-Flow procedure and explained to him what was going on, he said that I need to come to the office as soon as I could, that the catheter shifted in my back. He called the symptoms I was experiencing Horner’s Syndrome. When we arrived at his office, which is three hours from our home, he said that, yes, it had shifted and needed to be removed. He then said that my next option for pain relief would be the Spinal Cord Stimulator, which I refused (as I had heard way too many horror stories on it). So he referred me back to my family physician and for more physical therapy. I tried to do the therapy but, a few weeks in, the therapist said he felt the therapy was just doing more damage than good. I would walk out of their office sobbing. So, to this day, I still see my family doctor every month for RSD and I take several different medications everyday..sometimes the same medication several times a day. BUT, on a good note, I feel blessed to have such a great doctor who is very understanding and caring.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD/CRPS has affected my life in so many different ways. I can no longer do a lot of things with my children, as I have RSD in my right hand, arm, shoulder (and, within this past week, it went to my lower jaw). I used to work out regularly, with my husband, at the gym and I no longer can do that. House chores are now BIG chores for me to accomplish.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have an awesome family!! I thank God everyday for them. My husband and our four kids are so great to me. They all understand exactly about RSD. My mom and dad are, also, very supportive. My husband just recently got a tattoo, in support of my RSD, and it says "With Pain Comes Strength".

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Without faith, I wouldn’t have any hope. I have to have faith that someday there will be a cure and that, one day, I will wake up and I will be MYSELF again.

HOW HAVE YOU RE-INVENTED YOURSELF?
I’m a lot stronger than I thought I was. I take one day at a time. I only do as my body lets me, and I know what my limits are.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Honestly, I hate everything about RSD! The only good thing that came out of all this is the amazing, supportive people I have met through all the support groups. I know I’m not alone and, when I’m having a bad day, I know I can always count on my RSD family to pull me through.

WHAT THINGS DO YOU MISS THE MOST?
I miss just carrying on with my children. I miss hugs from my husband without him having to tell me first so I can brace myself. In all honesty, I miss my life before RSD became a part of it.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
THAT IT IS REAL! We are not crazy people looking for attention. We are not drug seekers. We feel something inside us that is unbearable. Just because we look ok on the outside doesn’t mean that’s how we feel on the inside. I have tried so many times to try and raise awareness in my small town but, since no one knows about it, I stand alone. My children hold me when I cry, My husband picks me off the floor when I’m in pain. People don’t see what the family of an RSD sufferer goes through with this horrible disease. RSD/CRPS is a very painful disease that can tear a person down. A great support group is so important.

RSD Interview #32 - With Amee Forbes

HOW AND WHEN DID YOU GET RSD?
In May of 2001 when I was fifteen, I decided to take my three year old niece for a walk to go see a rooster in our neighborhood. While I was carrying her back home, I slipped in the grass and twisted my left ankle in a ditch. I fell, then she fell on my ankle, knocking it against the sidewalk. The next day I went to the hospital, they said it was just a sprain, and they put me on crutches. A few months later while walking to school, I twisted my ankle again on some tree roots. After those two injuries, my ankles became very weak and would give out on me, or twist whenever.
It became very painful. I have been to a countless number of doctors, specialists, surgeons, etc from May 2001 to date. None of them were able to diagnose my problems, even though I had several tests, x-rays, bone scans, MRIs, and CT scans, which all came back normal (showing no trauma or injury). The doctors never believed me but I knew the pain I had was real, and it was terrible. The doctors kept putting me in casts or braces, and made me use crutches. I was on crutches my entire high school life. They all kept telling me it was all in my head, and that I was just stressed or depressed. And they were right about me being stressed and depressed, because I knew I had the pain but could not figure out how to get anyone besides my mother to believe me and try to help me find relief from it. I can almost predict the weather with this disease, as the pain becomes excruciating whenever it is about to rain or snow or the weather is extremely cold.
I have had a lifetime’s worth of physical therapy but, finally, praise GOD, I went in to see my primary care doctor who, by the way, is one of the most caring and knowledgeable doctors our family has ever come across, and he diagnosed my pain as RSD. It was confirmed by my Pain Management doctor as being RSD, and now I could begin the research on trying to find relief for “my disease” that finally had a name attached to it; Reflex Sympathetic Dystrophy (RSD).

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD has affected all aspects of my life, in every way. Before the RSD started affecting me, I was a vibrant person that wanted to became a Graphic Designer. After the pain started, I had to drop out of college and stop working because I was not able to concentrate while in pain, and my mind was foggy from pain pills. This disease made me feel worthless as a person, and a failure as a parent. It changed my relationship with my son because now I'm not able to run and play with him like I used to. We used to be inseparable, and everyone that knew us loved our relationship. Since he doesn't really understand what I’m going through, he is starting to act out in frustration, and I'm not really sure how to help him understand. We have a lot of kids in our family but I'm not able to attend family or church events anymore, because of being in fear that someone will accidentally bump into my ankle and cause me severe pain.
I constantly fear walking because of the thought of re-twisting my ankle. This disease took away my passion for living, working, and drawing…and I LOVED TO DRAW!!. Now all I do is sit around and cry, and cry some more, or go to doctor’s appointments, and cry more. I go days and nights without sleep. I'm ALWAYS depressed.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, I have a very good support system. My family is my rock. They are a gift from GOD and are always there, whenever I need them. My mom comes over and prepares meals for me and my son, when my pain is bad. Finally, starting February 18th, my step-dad will be driving me to and from Richmond every day for 2 weeks so that I can get the Calmare treatments that we found out about during our research for a treatment of RSD. I’ve also met some wonderful people on the RSD Facebook group that give me advice whenever I need it.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, faith plays a big part!! As a Christian, I always pray and ask GOD for strength. If it wasn't for my belief in GOD, and love for my son, I probably would have given up a long time ago. Although my belief is strong, I have asked God many times "why me, why am I going through this?" but then I remember that God wouldn't bring us to something without bringing us through it, and He never gives us more than we can handle.

HOW HAVE YOU RE-INVENTED YOURSELF?
I try to educate people, and spread awareness as much as possible. I have more understanding and compassion for people who are dealing with some sort of disease.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Even though this disease has changed my life, it has made me stronger. I don't feel judged anymore, when I ask for help, and I don't take the small stuff for granted anymore.

WHAT THINGS DO YOU MISS THE MOST?
I miss going to college.
I miss my passion for drawing and graphics.
I miss my close relationship with my son.
I miss going to family and church events.
I miss wearing my sneakers.
I miss feeling like a person.
I miss the ability to live a normal life.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Although my foot and ankle look normal on the outside (and I walk normal), the inside of my ankle bone feels like it's being cut open, while being on fire. And it hurts like hell to walk, but I refuse to give up on walking. I may cry and get discouraged, but I am a fighter and will never give up. There may not be a cure for RSD, but I will keep striving to live a somewhat normal life. I will be a walking testimony, praise GOD! People need to know that it is a chronic neurological disease that can affect anyone at any age, and may affect everyone differently, and that everyday life is a challenge for us. We may be able to do something one day, and the next day we may not even be able to get out of the bed. The public needs to know and understand that we are not making this up, this is not just “in our heads”. RSD is REAL. We are not mentally ill. We are not drug addicts. We are normal people who endure abnormal pain 24/7 365 days a year, and are just trying to live a normal life, aside from chronic pain.
Amee Forbes
God Bless

A Cup Of Love!

Happy Valentine's Day to all!

This beautiful photo was compliments of my sweet friend, Monique Mayer, and it inspired me to send a greeting to all of you. You are all special to me and I sincerely hope you are having a nice day. But, even more so, I pray that you all have a good support system and feel truly loved, in the depths of your soul! RSD is too hard to bear alone, so I WISH YOU LOVE!

Thanks to all who have participated in the  RSD Interviews, which I consider a "love" project, because of the intimate sharing that bonds us together and generates support with awareness..

Love and blessings. Jane  

RSD Interview #31 - With Steven Reimer

HOW AND WHEN DID YOU GET RSD?
In 2009, I sprained my knee and it just never got better. I had been an avid hiker and backpacker and I'd had a few knee injuries before, so it was nothing new and I figured it would just get better. When it started to get worse is when I decided to see a doctor and, a few “second opinions” later, I got the RSD diagnosis.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Life is pretty different now. I can no longer go hiking or backpacking, and I've had tremendous trouble finding work. I'm still unemployed but I'm working with the California Department of Rehab to help me out there. It's a constant dialogue with my body to know what my limits are, as far as physical activity. Thankfully, my RSD has not spread. It has stayed in my left leg but it's still pretty debilitating, at times. It presents a unique challenge as far as parenting goes, too. My daughter was born shortly after I got my diagnosis in 2009. So, in a weird way, it's fairly normal for us. I can still pick her up and carry her for short distances, but I do have trouble keeping up with her. Keeping up with a 3 year old is rather challenging, anyway, let alone with chronic pain.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, my family's been great and really helped me out throughout the whole thing.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Absolutely. It's the strange relationship of faith both being tested and being the thing that gets you through. RSD isn't the kind of diagnosis that just debilitates you and it's done with. It wears you down over time, and can have some unpredictable ups and downs and flare ups. Even the good days are still rather strenuous on the body and the mind; it can really get your spirits down. That's where faith helps to get you through, finding the moments in life that are worth all the pain and immersing yourself in them as often as you can.

HOW HAVE YOU RE-INVENTED YOURSELF?
I've really only re-invented myself superficially. I went to St Jude's pain management program in Brea, CA. I worked with therapists there to mechanically reconstruct the way I do things, like getting out of bed and taking showers and things. That was a tremendous help. As far as re-inventing the inner-more parts of myself, I never gave it much thought. I suppose I have been changed by all I've been through, but there were never any conscious changes or strategic decisions as to how I was going to face things emotionally. I prefer to take it head on and react genuinely.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Simple answer: yes, but you have to work at it. RSD and other maladies don't really bring anything good to you. If you want to find something good, you have to work at it and make it happen. If you make a friend at the place you go to for physical therapy, you're the one who made that happen. I'm a musician and I've written songs about going through the ups and downs of RSD. I wouldn't say that RSD gave me inspiration but, rather, that I turned that story into something artistic.

WHAT THINGS DO YOU MISS THE MOST?
Hiking, Backpacking, Camping, going crazy at concerts (yes, I used to enjoy a good mosh pit every now and again). I can still go camping but not quite to the degree or intensity I used to. It would be nice to really go roughing it again!

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I'd really just like to see a bit more awareness about chronic pain in general, not just RSD. There are a lot of people living in constant pain, and there's only mild public awareness about it. You have to do a bit of research to find out anything about it. RSD has been around for quite a while. Yet, it's only recently that we've started to make breakthroughs and discoveries as to what makes it tick. And there's still a lot we don't understand. With RSD, there doesn't have to be a physical cause, like a pinched nerve you can point to and say "well, there's your problem". If you think about it like a computer, RSD is a problem with the software, not the hardware. Your nervous system doesn't know how to stop sending pain signals.

RSD Interview #30 - With Jess Louise Amy

HOW AND WHEN DID YOU GET RSD?

When I was twelve years old, three girls fell on my foot.

I was in a severe flare and I did not walk for a year. I was forced to do intense physical therapy, which made this illness worse. I have not had any treatments or proper medication to help control my pain. I’m fifteen now, so I have suffered for three years.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I lost everything…my sports, happiness, hope, friends…and I was disappointed over and over. It has turned my life upside down and now I can’t be a normal kid and have fun. Instead I am left at home, watching everyone else do things I can‘t. At school, no one believed my pain (not even some teachers). I started to get severely bullied and stress affected my pain, so it spread. I have lost all friends. It has made me and everyone else hate me. I can’t go to school anymore, so I am more lonely. I do correspondence. I lost all my dreams and hopes, as well as the future I always dreamed of. It stops me sleeping and eating because the pain can be so awful. This illness has made me give up.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Nope.

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

No, not at all. I lost all faith a long time ago.

HOW HAVE YOU RE-INVENTED YOURSELF?

I haven’t at all. With no help, like medication or treatments, I haven’t found anything. I don't know how to.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

No, not really. The only thing is meeting amazing people over Facebook. That means a lot to me.

WHAT THINGS DO YOU MISS THE MOST?

My happiness, having fun, playing sports (especially gymnastics). And I miss being a normal, happy, smiling kid that gave everything a go. I miss being able to go to school and I miss having friends.

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

I want them to know that just cause I have this monster illness doesn’t mean I’m a different person. I’m still me, Jess, but just going though excruciating pain and horrible symptoms. I want them to know that this pain is real and that it is extremely hard to live with. 

RSD Interview #29 - With Georgy Mills

HOW AND WHEN DID YOU GET CRPS
It was a beautiful, warm, sunny day on the 25th of June 2005. Hubby had been called into work so I rang my friend to see if she would like to come over for a coffee. Instead, she invited me over to barbeque. “Great”, I said, “will see you at 1:00“.

After a lovely afternoon, I said my goodbyes and got into my car for the short 5k journey home. On the way, I stopped at a small one stop shop, as I was thirsty and thought I would get myself a can of Coca Cola. I was on crutches, and have been for 20 years, due to Osteoarthritis in my lower back and right hip. I parked right outside the shop and got out of the car with my crutches. As I walked toward the shop, the automatic doors opened and the next thing I knew I was in the hospital. Thank God the incident was witnessed by the person who rang the ambulance and saw what happened; my crutch had got caught up in a plastic loop that was laying on the floor by the rubbish bin. (These plastic loops are used for bundles of newspapers that are delivered to the shop; the loop had not been cut.) I was told that I just went down in a heap, banging my head on a metal rail as I went down, knocking myself out.When I came round, I was in the x-ray room. I was told I was concussed, had a fractured left knee, and a broken right wrist and elbow. After a three day stay in the hospital, I was sent home in a wheelchair, as I was now rendered useless to walk.

Oh my gosh, I thought!! My daughter was getting married in four weeks time. How on earth was I going to go looking like this? The wedding was going to be in Mexico. There were twenty of us booked to fly from the UK, including my daughter and her new husband-to-be. I was determined to be out of the wheelchair in time for the wedding. There was no way I was going to miss the wedding and an all inclusive holiday in Mexico.  The hospital was really good when I explained the situation. Two days before we flew, they x-rayed my arm and leg and said it was safe to remove the plaster off my arm and leg, which they replaced with soft but tight tubi-grip. Even though I was still in a wheelchair, I went to Mexico and saw my beautiful daughter get married. I even managed to stand, with the help of my hubby and friend, to have photos taken. Not only was I proud of my daughter that day but, also, of myself.

After getting back home, I realized something wasn't right. My arm was on fire and had searing pains shooting through it. My leg had turned a funny color and was swelling. A few days would go by and my leg would go down, leaving purple-looking thread veins. I was worried, but I thought it would get better and go away. I was too worried to go to the doctor about my leg, as I had lost my mum to Bone Cancer just four months earlier. I nursed her in her home for three months and was missing my own family dreadfully, as my mum lived 120k away. I had to watch some dreadful things while nursing her. One of them was when I noticed her leg turning black from the foot up, then seeing her go through the painful process of having to have her leg amputated. She died a week later, on Christmas Eve.  With all that stuck in my mind, I was worried I had the same thing happening to me and was too frightened to say anything to my family or friends, So, for two years, I did nothing about my leg (even though I went to my doctor and complained about my arm, but was just given good old Paracetamol).

One day, my leg was so painful and swollen it had turned dark blue right up to my knee, and with the same searing pain as my arm. I showed my hubby and he took me to the doctors straight away, as he was so worried when I showed him.  On examination, I was given a Heparin injection in the tummy and was told I could have a blood clot. The next thing I knew, I was in the hospital having an ultra-sound. Needless to say, I was thinking of my mum and that I was going to have to go through the same thing as her. There were no words to describe what I was feeling at the time. All I could do was pray to God, and he must of heard me (as no blood clot was found).

After that, I went back to my doctor and told him what I had been going through for the last two years with my leg, and why I was too frightened to mention it before. And that’s where my next nightmare began. For five years, I went through the wrong medications, had the wrong Physio, and saw seven different surgeons. Every three months for those five years, I was treated for Bursitis of the knee, so I was having painful Cortisone injections into the kneecap. I was made to see four different Psychiatrists, had numerous MRI scans, CAT scans, X-rays, Blood tests, Electrotherapy, Ultrasounds and Hydrotherapy…the list goes on. I also had two falls, both while going up the stairs, where my bad knee locked and I broke my arm again on both occasions; once in 2008 then again in 2010. It was my right arm both times. And, to top it off, in June of 2011, I slipped getting into the bath, resulting in a broken nose.

In April of 2012, I had a new doctor who thought I could have something other than what I was being treated for, and I was sent to see a specialist who deals only in CRPS/RSD. Two weeks later, after seeing him, I received a letter. Finally, I had a face to the name of what I actually had. After all the pain, stress, anxiety, and not knowing, I was not mad that it said I had CRPS TYPE 11.  “IT” had a name. The relief of knowing what I had wrong with me was like having a huge weight being lifted off my shoulders. But, then, to be told there is no cure (and the thought that I have a lifetime of this) has only made me a stronger person.

I thought I was alone with this disease, as no-one understood it when I said I have CRPS. My friends, family and neighbors were used to seeing me on crutches, so this added disease meant nothing to them. They can't see what’s going on in your body. They can't feel the pain that you have to endure, day in and day out. They don't see the sleepless nights, the sweats, or the agony you are going through. In the end, you get fed up of trying to explain it when someone asks how you are, ‘cause you know by the look on their faces that they haven't got a clue what you are going through. So the simplest thing I used to say is "I'm fine" (and the stupid thing is they believed it).

A few months ago, I was looking at Facebook and, out of curiosity, I punched in RSD/CRPS and came across a site called rsdcrpssociety and I joined the group. Then I was asked by Paul (who started the group) if I would become an administrator and I accepted straight away. Since joining, I realize I am not alone with this crippling disease. There are millions of us out there and we all need help, support, answers, or even a listening ear (someone who understands what we/they are going through). All our stories are different but they all seem to have the same end result… RSD/CRPS.
We still need more members to help other RSD/CPRS-ers in pain and to help us raise awareness of our disease. We would love for anyone who reads this to come and join us at
http://www.facebook.com/#!/groups/494693863885243/  .

I no longer say I'M FINE, when asked. I now understand how to make the person who asks stand and listen to what RSD/CRPS is and to realize that this disease is not new, that it has been around for a long time and that doctors, governments and society (as a whole) need educating to put this disease on the map. I will never accept that my pain is all in my mind (as was suggested in the past), that my leg and arm turning purple and swelling with ulcers and burning like an inferno inside is a figment of my imagination. Nor will I ever accept that this disease is a mental disorder. Because of the times that I have doctor or hospital appointments and they can’t see the symptoms because the swelling has gone down (typical) or my flare has subsided, I now take dated photos and bring them with me to the appointments.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Every day with RSD/CRPS is a struggle but, having a lifetime of pain already (and now this, too),  I am determined that it's not going to ruin my life (I will survive!).

DO YOU HAVE A GOOD SUPPORT SYSTEM
I have the most amazing husband who spoils me rotten and is there for me every step of the way. Without him, I would be a lost soul. My two daughters never cease to amaze me, with their help and determination and love. And my two beautiful grandchildren (who know how to do the softest hugs and cuddles with so much love). And I can’t forget my wonderful doctor, who sent me up the right road and who I can’t thank enough.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Faith is my HOPE.

HOW HAVE YOU RE-INVENTED YOURSELF?
I am a stronger person mentally and determined that this disease won't win .

HAS ANYTHING GOOD COME FROM THIS TRIAL?
YES, knowing I am not alone and that, around the world, there are many of us who are going through the same thing; that we can share our pain and understand what each other is going through.

WHAT THINGS DO YOU MISS THE MOST?
I miss my friends, who don't understand, and I miss the “biggest and hardest hug ever” that I used to get from my hubby, my children and my grandchildren.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I think a documentary should be made for all of us with Chronic Pain. People need educating, doctors need educating, governments need educating, and carers need educating.

*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
"One life." Live it to the best of your ability and remember that, even though we are in pain, there is always someone out there who is worse off than us.

Gentle Hugs to All xx

RSD Interview #28 - With Heidi Marie Sheets

HOW AND WHEN DID YOU GET RSD?
I underwent oscillatory shrinkage surgery of my right shoulder on September 15, 2005. I was to be out of work for 6 weeks. Since the surgery, I have had intense, burning, stabbing pain which has not only worsened but has spread. Initially, all the doctors thought I was just wanting medication. Then, after requesting three "second opinions" and going to a large reputable hospital in the city of Detroit (close to my home), I first heard the term RSDS from an Orthopedic Surgeon, who referred me to a pain specialist at the hospital. They did many tests and confirmed the diagnosis. It is in my right shoulder, face, skull, neck, scapula, breast and down the right side of my back. Lately, I can feel stabs in certain areas of my right thigh and it, too, is beginning to burn.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My husband of 11 years could not tolerate all the doctors’ appointments, my depression and mood swings. And, eventually, he left me. I cannot care for my children the way I would like to. I have five children, whose ages are 23, 19, 17 and 11-yr-old twins. Since the divorce, my ex-husband and I  share custody. I used to be very active and worked at a good job, but  I am no longer able to work outside the home. I cannot keep up the house the way I would like, and I forget things easily. Due to my condition and how I am feeling, I miss many important events (including family gatherings). I miss certain activities with the children. I used to love to play tennis and golf, but both are simply out of the question now.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
No. I had a wonderful Palliative Care Physician, who recently relocated his practice and went back to oncology. So I have a new physician who has changed the regiment I was on and was doing well with, because he was not comfortable prescribing the dosage of medication it required to keep me comfortable. So, for the past six months, I have been in great pain (almost as bad as when I was first diagnosed). My family is not real close and I don't get a lot of help from them. My older children are teenagers and do their own thing, and my oldest lives out of state. So I feel pretty alone most of the time. I don't always get the dishes done, and we eat out more than we used to...depending upon how I am feeling. Sharing custody of the children helps because I get a full week to catch up, but it's like a whirlwind at times. I wish I had more help. Most of my friends don't come around much anymore because they don't know what to do or say. I was a very strong-willed, independent woman, and I certainly am no longer that person.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I sent all of my children to parochial school and, throughout my marriage, I attended church regularly. But, for some reason, I have lost faith. I read at home, go online and find strength in things I believe or read; things I have been taught. But I do not utilize the power of prayer as much as many.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have become a much more understanding, caring and compassionate person. I went through a very dark depression I never thought I would come out of, but it has made me stronger (even with all of the struggles I am currently facing; not only from the illness, but also from financial problems, divorce, and losing faith in the person you thought loved you the most).

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I've learned to depend on myself, and am starting to take steps to trust others again.

WHAT THINGS DO YOU MISS THE MOST?
*I miss not worrying whether my disease will hinder me from attending appointments or kids’ events.
*And I miss being able to be active in my younger childrens’ schooling, like I was with the older girls.
*I miss having a day without a worry in my head and feeling as though people see me for me, not for what I am going through.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
This illness knows no boundaries. It can strike anyone, at anytime. If I happen to put make-up on one day and fix my hair, it does not mean I am not in any pain...it just means I felt like trying to feel better about myself that day. You cannot see this illness. It is hard for me even to describe what I deal with on a daily basis to people closest to me, who see me struggle and argue with physicians. I want people to know that doctors do not know everything about everything, and you MUST know and trust your body and what it is telling you. You are your best advocate. You need to fight for what you know you are going through, regardless of how many times you must repeat yourself.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
I live in southeastern Michigan and I would very much like to be part of any trials that may be going on in the Midwest.  I would love to try a Ketamine infusion, as it is basically the only procedure I HAVE NOT had. I had a spinal stimulator implantation, had it re-aligned and laminectomies done as part of that, and ultimately removal (which has caused other pain), musculoskeletal, in addition to the initial injury and surgery to my shoulder. What has worked best for people who have tried everything that pain clinics and neurologists have to offer? Is opiate dependence an issue, if it allows quality of life?
Thank you for allowing me to participate in your blog/book. I have thought of doing something similar to raise awareness. Not that Fibromyalgia is anything to snicker at, but I am tired of people referring to RSD as a type of this, as I feel the neuralgia and burning, the effects from the brain waves, make it much more complicated.

RSD Interview #27 - With Ciarabel and Christina McSwain

*The responses in black are my daughter's words. The responses in blue are my words, as her mother. 

HOW AND WHEN DID YOU GET RSD?
It just showed up while I was at school taking a test. It started feeling like a bubbling going down from the top of my arm to my fingers, like my arm was getting really big. It really hurt. My arm turned red and splotchy. I was 8 years old at the time.
My daughter went to school on a Friday, a normal, happy, healthy child, and came home with her entire left arm bright red and she was telling me it hurt a lot. I medicated her, thinking maybe she was having an allergic reaction. A few hours later, her left arm became mottled and I rushed her to the ER. We were in the ER three times over that weekend, and she was diagnosed with RSD by two different Neurologists while there. 

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I can't go on the monkey bars. I can't do cart wheels. I can't “play fight” with my brothers. I have to wear a sling to keep other kids from bumping into my arm. It makes me scared to do things because I don't want my arm to hurt.
My daughter is no longer the happy, little girl she used to be. She is always in pain, always in tears. I have lost a lot of hours from work taking her back and forth to specialist appointments, trying to help her get into remission. She is scared to play outside, and scared to take a shower because even water causes her severe pain. 

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, Dr. Wayne, Dr. Ghandi, Dr. Marks, my Mommy and Daddy, and my Nana.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, my Nana prays with me that I will get better.
Without my faith that God will help my daughter go into remission, and that God has given my daughter this disease, I think I would be lost. 

HOW HAVE YOU RE-INVENTED YOURSELF?
I do stuff with just one arm, and it's easy now that I'm used to it.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I don't know
My daughter is so brave and strong. She doesn't see how strong she is, but I see her become stronger every single day. 

WHAT THINGS DO YOU MISS THE MOST?
A lot of stuff. I miss being a normal kid.
I miss her smiles and laughter. I miss her innocence that this disease has stolen from her. I miss her being happy. 

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I'm still Ciarabel. I don't want people to be afraid to play with me because of my arm. I want people to know that this is a bad disease and no one deserves to get it.
This disease knows no gender or age. Anyone is at risk. My daughter had no injury or infection that caused her to get RSD. Her specialists believe she simply bumped her arm wrong. This disease robs people of the simplest things in their life because of the pain. It literally becomes the focal point of the entire family because the simplest thing can cause a pain flare 10/10 and can take hours before the pain is under control. You can't leave the house without bringing the proper medication with you, in case a pain flare occurs, and sometimes plans have to be cancelled due to pain. Or sometimes we get to where we need/want to go and have to leave in the middle of whatever activity we are participating in due to a pain flare.

RSD Interview #26 - With Kath Carr

HOW AND WHEN DID YOU GET RSD?
I got RSD five years ago from a blood clot in my leg.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It has affected my life totally. I have become house bound, more or less. I have lost 3 stone in weight. I don't sleep. I've lost all my friends and most of my family. I can't work. I'm in a wheel chair a lot of the time. I feel like I'm living in hell!

DO YOU HAVE A GOOD SUPPORT SYSTEM?
No .

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
 I lost my faith years ago.

HOW HAVE YOU RE-INVENTED YOURSELF?
I don't believe I have, to be honest. I'm stuck because of the lack of awareness. My treatment is not very good. They tell me they don't know enough.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, views on sufferers.

WHAT THINGS DO YOU MISS THE MOST?
Being able to do things that normally you wouldn't think twice about.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
How the condition affects me, as a person, and my life.

*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
I am constantly fighting for treatment and made to feel like a fake or a junky. I think most of RSD sufferers have the same problem .

RSD Interview #25 - With Lauren Jennifer

HOW AND WHEN DID YOU GET RSD?
I got it in 2007, after a stress fracture and groin strain (in the groin and pubic bone). Poor therapy and doctor guidance led me to still go to work (walking on injured leg). I am a trainer. I was not working out but, to make money, I still walked, climbed subway stairs in NYC to get to work, and then stand on my feet to train clients. Instead, I should have been ordered rest.

In January and February of 2008, after working with two therapists, my leg and muscles in left hip and left abdomen started to pull very hard and leave me in pain spasms for hours at a time. I cannot describe them. They felt like electric jolts in my pelvic bone, like an electric wave was vibrating inside me for hours. Certain things would set it off; like touch, intense sound, surprising sounds and movements, temperature changes, etc. I was 4'11¾” tall, weighed 112 with muscle and I dropped to 88lbs in three months. Also, my hair was falling out in clumps.

In March 2008, after I moved the wrong way in a meditation class sitting on the chair---causing a massive spasm---I broke down and was immediately taken to a pain management doctor (who SAVED MY LIFE!).  He diagnosed me immediately, put me on bed rest for two months, put me on sedatives and muscle relaxers and 1200mg. of Motrin a day to use as a pain killer and an attempt to heal muscle tissue, as well.

In April of 2008, I met with the doctor, the therapist and a Reiki healer. My RSD took about a year to come undone, and in another year I got very mobile, and in two years I got strong. In this year of 2013, I have Restless Leg Syndrome and a strange sensation in my left leg, but no pain. I think I was able to save myself because I knew how to strengthen weak muscles that were holding onto tendon spasms. If I  wasn't aware of my own body and fitness when I got hurt, I think RSD would have done me in forever…believing even that fitness in earlier years helped me come back.

The Reiki put me into very relaxed mental and physical states, where I was able to disconnect from pain and move better after each session. Also, my RSD was in my pelvis; a big bone, surrounded by a lot of muscles, tendons and blood. I think people who have it in their extremities (feet and hands) suffer so much more (because blood is easily constricted at extremities, if muscles tighten and skin swells).
I was stuck in my hip. By February of 2008, I could not walk or go down stairs. Then in April 2008, I was put in 90 degree water to learn to move my limb and start to walk. Walking in water eventually coaxed the limb into movement. Even though I was in pain and had RSD spasms with therapy, I did not give in to them. I let them pass and went back to therapy the next day.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My training career is about helping others in pain; healing their injuries with re-alignment of joints. I work with all populations. My experience with RSD made me calmer about life. I love having a balance. I will not over-work myself. I know when to rest my body.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
YES, A VERY GOOD ONE !
*I was in therapy for a long time. I wrote a lot about what I went through; even a mini-book, though not published.
*My parents and my best friends were amazing.
*The Reiki healer was my ex boyfriend’s mother. My boyfriend and I broke up in 2009 but he was very supportive. We did mall walking and he got me to go on an escalator again in May of 2009.
*I stay on Lexapro for anxiety about RSD coming back.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes. I am not very religious but I prayed and cried to God a lot.
I cried out to my late grandmother and asked her to hold me spiritually.
I cried very, very hard for weeks. I wanted my leg back so badly.
In April of 2009, I started having running dreams. In my dreams, I could run. I would wake up from them and realize I was dreaming, but I remember the physical sensations from my dreams in my leg .
I prayed just to walk again. I didn’t care about being a trainer again but, as I started to walk again, I realized-I am going all the way…I want my life back.

HOW HAVE YOU RE-INVENTED YOURSELF?
I am a very strong person. I was strong when I got hurt but I am very humbled now. I am very balanced in my life. I work hard, heal other people and make sure to nourish my own needs, too.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

WHAT THINGS DO YOU MISS THE MOST?

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That there may not be a cure BUT Reiki, group meditation, acupuncture and water therapy--even if they do not cure---can maybe relieve the symptoms for just a few hours.
Learning to live with disease, not looking for a cure, then giving up on yourself and never wanting to try new therapies…I have met many RSD people who kind of give up or do not really have the resources I had. They almost do not see all the possibilities. They rely on only their Western doctor and call it a day, I used a lot of Eastern healing. I almost went to a native American healer to help me.

RSD Interview #24 - With Amanda Siebe

HOW AND WHEN DID YOU GET RSD?
I got CRPS (also known as RSD) when I was 27 years old. The entire year prior to my CRPS, I spent recovering from surgery to my left foot. That surgery had gone great and six weeks later I was healed and back to work. I was a restaurant manager and spent  8-14 hours a day, 5 or 6 days a week, on my feet. So, 8 months later, I was still doing great until one morning in December, when the kitchen was out of avocados. So I ran across the street to the market to grab some and, on the way back, the unthinkable happened. Klutzy me, in all of my glory, tripped in a pothole, on my left foot, and fell. My left foot...the same foot that I had surgery on. Instantly, I could not move it. I could not turn it. I could not put weight on it. I thought I had torn my tendon. The swelling was instantaneous. I went inside, hoping for the best; crossing my fingers that I just tweaked it and that it would soon feel better. I finished that busy day and went home. The next day was worse, though. It took 3 days for my work to send me to the doctor. After the doctor, I was sent back to work on crutches. Using crutches on a slippery floor is incredibly dangerous and I was working in a kitchen with oily, greasy floors for two weeks. Everyday I fell, over and over and over again, until finally I had enough. I took 6 weeks of temporary disability off. The injury, no treatment, and repeatedly injuring my foot over and over again is what caused my CRPS. It took until May for my Workers Comp. to get me back into a doctor, and until July for her to diagnose me. I have bilateral CRPS type 1 stage 2 below my knees.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It is interesting how inter-related parts of the body are. I have CRPS in both of my legs. My CRPS, of course, affects the way I walk (or should I say shuffle?). Shuffling affects my hips and their alignment. Hips affect the back, which affects the neck. It is all one long, crazy process that leads to full body pain. Now it is hard to think back to life before pain. Before my first surgery, which was 8 months pre-CRPS, I was a firefighter. I had just gotten into paramedic school and moved my son and I to San Francisco for a new start after leaving his dad. I was an adult leader in the Boy Scouts and the Girl Scouts. I taught high adventure; including whitewater rafting, camping, backpacking, snow caving, and rope courses. I was a professional whitewater rafting guide on the Deschutes River. It was a lifestyle I loved and I could not get enough of it. Every weekend, I was doing something fun and exciting, or I was on shift at the fire station or at the ambulance company up in Portland. It was a great way to live. It is really hard looking back on it and knowing that I am never going to work an ambulance again or run into a burning building with a hose again. There are times when I get really depressed thinking back on it but, then again, I am so lucky for what I have.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
My support system is not big but it is great. My husband is not only the lead in my support system but also my caretaker. Since being told that I can no longer drive due to the medications I am on, he drives me and attends every appointment and is with me every step of the way. He works from home for now and he helps me with every aspect of my life…from making food, getting to the bathroom, and getting in and out of the bathtub; he helps me with it all. I don't know what I would do without him. My mother is another person who is always at my side. She is the only person that really understands my pain and the horrible side effects of medication. She was diagnosed this year with Psoriatic Arthritis in her hands and feet. On her bad days, she has almost as difficult a time walking as I do. When I have doctor appointments (which is several times a week), she and my sister help take care of my son. My sister is also a huge help. It is hard for me to play with my son like I used to. So when my boy, Keagan, has energy to burn, she takes him to the park or the nearest play place for hours on end to wear him out so we will both get sleep that night. I have friends that I talk to a lot online, which is my major source of contact with the outside world, but that is about it.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Religion is a hard topic for me. My brother is an extremist Christian and believes my pain syndrome is a demon that lives inside of me, trying to possess me, and that the only way I am going to be cured is through laying on of hands and an exorcism. Hearing that and believing in a Christian God is difficult. I try to keep my religion and my disease separate. I am Wiccan.

HOW HAVE YOU RE-INVENTED YOURSELF?
It is really interesting. Since being diagnosed with CRPS, I have thrown myself into trying to become an activist. Every chance I get to talk about my CRPS I take. I believe that the only way that we are going to find a cure and become more socially acceptable is if we talk about it and educate people about what is wrong with us. I started a blog that has really become an outlet for me on how I am feeling and being able to process what is happening to me. I have tried to take up different activities to fill the time that I now stay in bed. I have tried quilting and sewing. I have tried reading and drawing. But writing has been the only thing that has stuck. The more I write the better I feel and the better I get at it, which, in turn, makes me feel even better.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Since the onset of my CRPS, I have married Steven, my partner and greatest asset in overcoming this disease. We both say that if our marriage can survive this then it can survive anything. I have become a better writer and have found a new avenue in which to channel my activism. Even though I have had my good days and my bad, I believe that I have become a better person through my experience. Luckily for me, the treatment of my CRPS has been covered by my Workers Comp. case. The hard part is that they know very little about the disease and have been dragging their feet on my treatments. My goal has been to educate them and to continue reworking their treatment of CRPS patients so that maybe, the next case they get, the patient will have an easier time than I am having.

WHAT THINGS DO YOU MISS THE MOST?
I miss so many things. I miss mountain climbing and whitewater rafting. I miss my horse and horseback riding. I miss running and hiking to the middle of nowhere. But what I miss more is being able to walk to the bathroom on my own. I miss being able to walk without a cane or a walker. I miss being able to play with my son and helping in his preschool classes. I miss being able to teach him how to swim. I miss taking my dog for a walk. I never got to dance with my husband at our wedding or take a honeymoon. I hate that I had to miss those experiences with him. I hate the fact that I cannot have a baby with him right now and that we may never be able to have one because of the medications that I am on. I miss feeling good. I miss nights where I could sleep through the whole night without waking up crying in pain or crying in my sleep. I miss dreams that were good instead of the nightmares I have now about things attacking my legs. I miss snuggling with my legs wrapped around my husband. I miss shaving my legs. I miss walking barefoot in the sand. I miss my legs being the same color as my hands. My life is so small now that I miss my life. I feel like the world is passing me by and here I am stuck in my bed because it is too painful to get out.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Just because I look the same does not mean I feel the same. I look like the same Amanda but inside I am dying from the burning, tearing, cutting pain in my legs. I want them to know there are things that I can do and things that I can't, and let me be the one to decide which is which. Even though I hurt, I am still mentally the same person, so don't talk to me like I am slow. Just because there is no cure for my disease does not mean I am not going to strive everyday for remission. People with chronic pain are fighters. Just the fact that we are awake shows that is true. It would be so much easier to sleep the day away or give up, but we keep fighting. What we go through every minute of every day is more painful than a broken bone, more painful than having Cancer, and more painful than having a baby all natural (which I have done). This is the pain I face for the rest of my life. This is my future. But I am going to beat it. I am not a quitter. One day you will see me in high heels on vacation, finally getting that first dance with my husband. That is also in my future because I don't just have CRPS, I am going to live while having CRPS.

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

Amanda Siebe

RSD Interview #23 - With Gregory Wilson

HOW AND WHEN DID YOU GET RSD?
I was tackled from behind by a rogue policeman weighing 300 lbs. I weighed 135 and I was weak from just getting over doing a REB-INTRON Interferron Treatment therapy for Hep-C for 5 months. I was the weakest and most DEAD I had ever felt, UNTIL my tailbone hit the cement with his force. Then the Ontario Cops handcuffed me and really ruffed me up by throwing me over the hood, and my leg got caught on the push bar and I passed out from the pain; waking up to them choking me on the ground until I saw FUZZY PURPLE. The police argued the situation, saying they were helping me breathe and I got rough with them. And I lost the case with a public defender, so I could not sue them. Though I did get a $300. check in the mail from the jail, saying they did something wrong to me that day when I was arrested.

My body changed instantly that day. I started having sweat attacks with weird body/spine nagging pain. My body was cold and yet, from my knees down, was on fire; like ants eating away at the flesh from the inside…Red ants, the ones that hurt!
The bottoms of my heels felt as if something metal was pounding on the bottom of them and forcing me to walk on no padding.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It affected every thing there is to do with life.
*Besides all the pain it created, it changed my sex life dramatically. My girlfriend at the time did not understand what was happening to me and started giving me attitude. And her not caring what it did to me the next day was pretty hurtful.
Ultimately, I started feeling that it wasn’t worth the attitude, the pain flare-up, and me being sick afterward.

*Also, I couldn't cook for myself anymore without something bad happening; like leaving the fire on and burning up whatever was cooking, smoking out the whole house. With all my pets, I could not risk that happening. So I had to go on a liquid diet. My teeth are all bad now because RSD finished them off by grinding them at night. I take enough medication to knock out a horse but don’t feel anything but less pain and have to deal with the perception that creates.
*I have almost committed suicide because of how badly doctors have treated me. Being labeled a drug chaser at two ER hospitals is belittling and really disgusts me. It makes me feel like a piece of crap when, instead, I should be treated with respect.
*I lost the ability to drink water. The more I drank the more I sweat it out and froze doing it.
*I became afraid or people and situations that can cause me harm. I do not go anywhere without my stun guns (3 of them).

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I am building one; thanks to Facebook, RSDSA and my IEHP insurance.
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DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, but I pray about it and ask God to direct me to the right people who can help me.

HOW HAVE YOU RE-INVENTED YOURSELF?
I want to become an important part of RSD Awareness (trying to make sure no one has to go through the hell I have had to go through). Stress is a killer, and bad bedside manner by a doctor is not needed with this disease.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, meeting people with the same disease and similar circumstances.

WHAT THINGS DO YOU MISS THE MOST?
Driving, sitting, laying flat on my back, being pain free in my feet so I could walk, my old personality, and not being scared of the public.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I carry 3 stun guns to protect myself from harm.
To leave me alone and not touch me when they see me.
 Just ask how I am, no hugs by surprise.