Thursday, March 28, 2013

RSD Interview With Dana Elise Singer


B"H
How did you get RSD/CRPS?
On a Sunday in December of 2006, I took a bad fall landing on my right knee with all my weight. I was leaving for Los Angeles the next day, as I was scheduled to have surgery on Tuesday at UCLA. It’s a fairly routine surgery where they go into my face and embolyze, ligate, and glue the blood vessels that are putting pressure on my nose, causing me to have bleeding episodes, as I have a genetic blood disease that is akin to hemophilia called Von Willibrandt's Disease. Coincidentally, I also have an Arterial Vascular Malformation or AVM, specifically Tilangictasias, which allows the blood to pool up and put pressure on the nose and make it start to bleed. This is why they needed to operate. I have had this surgery over ten times in my life, since I was 17 (and I am 42 now).
I want to mention I have been chronically ill since I was 4 years old. It started with Migraine Headaches that I passed out from in nursery school, and was diagnosed with by a neurologist at that time. He found a migrainous wave on my EKG, which is rare. I have been treated for migraine headaches since 1974.  When I was 6 years old, I began to have serious epistaxis episodes (bloody noses) that required hospital trips each time and sometimes hospital admissions as I bled for a minimum of 3 hours up to 8-10 hours with massive clots, which was abnormal. This continued for 3 years until I had to have my tonsils and adenoids out for repetitive Strep Throat Infections that occurred a minimum of 10 times per year from the age of 5. After my tonsillectomy and adenoidectomy, I hemorrhaged from the surgical site which occurs in 1/250,000 cases. So the Head and Neck specialist who treated my epistaxis episodes and performed the tonsillectomy and adenoidectomy sent me to a pediatric hematologist, who diagnosed me with Von Willbrandt's and attributed the epistaxis to that, as well as to a Factor XI Deficiency. Therefore, anytime I have surgery, even dental surgery, I need infusions of Vasopressin and Fresh Frozen Plasma. Prior to the discovery of Vasopressin, I had to get 35 bags of Cryo, which is Human Blood Factor, which is what exposed me to the Hepatitis C that I got and, even possibly, to the HIV/AIDS Virus (as I received the blood factor during the years that HIV/AIDS went undetected in the blood supply in the dirtiest blood bank in the USA, which was California). I distinctly remember crying when Ryan White died, thinking he died for me or in my place.
So I lived like this, in and out of the hospital/missing loads of school, my record being 85 days of the 5th grade, bleeding out of my nose randomly wherever I went until I was 17 and was sent to UCLA's Head and Neck Department to investigate my epistaxis problem as it had grown worse and more severe. They talked about doing a skin graft over the area of my nose that would never heal from where it bled, but they would not be using sinus tissue. Rather, they would use skin from the outside of my body, which is not self-cleaning and the results can be rather problematic, if you can imagine the odors you have to deal with and the cleaning process you have to deal with to keep it from smelling. So I was adamantly against that idea. The other option was to do Interventional Radiology, like they do for Stroke patients, but stop at the face and check out the structures there. That is how they discovered I have an AVM consisting of Tilangictasias. An irregular structure of blood vessels and arteries where more blood vessels sprouted out of and grew from the proper blood vessel structure which put excessive blood pressure on my nose and made it start bleeding. My Von Willibrandt's and Factor XI Deficiency then kicked in and prevented it from clotting. Of course, the surgery to close off these vessels triggers my migraines for years after.
I pretty much maintained my life, having these surgeries further and further apart, until the epistaxis became manageable. I lived with all these conditions I mentioned and managed to graduate college Magna Cum Laude and go to Law School. Then, my back went out and I needed to have back surgery in 2004. I have since been diagnosed with Herniations, Bulges, Degenerative Disc Disease, Sciatica, Forminal Narrowing, Stenosis, Spondylitis, Fibromyalgia, Osteopenia, Hypothyroidism, and Insulin Resistance, as well. I have included this information, so you recognize that RSD/CRPS has been my latest medical battle, not my first. I have lived with chronic pain my whole life, so my experience and reaction to it is probably much different than many others'.
Back to the fall in December of 2006 and my CRPS/RSD Injury, I rested that night and got up the next morning to pack, but my knee swelled up to the size of a basketball within 20 minutes, so I had to get back down. Fortunately, my husband was able to finish packing for me. I was in terrible pain and used some of my pain medicine I had, as I was already a chronic pain patient. I somehow managed to get to Los Angeles, have my surgery, stay in the hospital afterwards, and come home to my Nana's z”l. (z"l is shorthand for the Hebrew expression zichrona levracha, which means that the deceased female person’s memory shall be for a blessing). On December 25th, the pain was so unbearable I went to the ER at 7AM and had an MRI, which was inconclusive indicating a possible torn meniscus. By that time, I had developed a very strange rash on my right leg below the knee. The doctors at the ER biopsied it to check for Vasculitis, which would make sense because of my Hepatitis C. With Hepatitis C comes a condition called Cryoglobulin Anemia, which is a Lupus Antibody that causes Vasculitis. So the doctors thought they had me all figured out. They sent me home to await the biopsy results. That week the results came back negative for Cryoglobulin Anemia. So I was back to square one, except for seeing an orthopedist about the torn meniscus.
On December 31st, I returned to the ER to be admitted for Shingles and for another MRI of the knee. Mind you, both times, my knee was too swollen to fit in the knee casing of the MRI machine, so they bound it with a sheet without medicating me in any fashion for pain or anxiety. This time, I passed out from the pain after throwing up all over the MRI room. The results of the second MRI clearly indicated no torn meniscus. I stayed in the hospital for seven days to be treated for pain and be given IV medicine for the shingles, only to be diagnosed with Munchausen's and Munchausen’s By Proxy and then kicked out.
When I left the hospital, I went to see Dr. Ernestina Saxton for Pain Management in Los Angeles who believed there was something very wrong. She sent me to my old neurologist, Dr. Sheldon Jordan, in West Los Angeles, who immediately diagnosed me with RSD of the right knee. Furthermore, Dr. Saxton took a long history, noticed my posture, and listened to my complaints of pain in my arms, shoulders, and brachial plexus, took my pulses in my arms when they were over my head, and highly suspected I had Thoracic Outlet Syndrome. She immediately sent me to UCLA where there was the only MRA machine in Los Angeles to have an "MRI" that showed the nerves and blood vessels to indicate if I had compression of the nerves and blood vessels. Actually, I had a severe case with quite remarkable anatomy. It turns out, Thoracic Outlet Syndrome or TOS is a type of CRPS, but I did not know that at the time. Hence, I had two causes of RSD/CRPS all along, but I never knew it. I only knew the pain and limitations.
After the MRA confirmed the existence of TOS, I had my first Sympathetic Nerve Block done in order to see if surgical correction would be beneficial or not. All I will say is that I have never had anything cause me so much more pain in my entire life than that block. My painful response indicated I was a candidate for bilateral first rib resections and scalenectomies done one side at a time. I also had sympathectomies done at the same time for the Raynaud's and for the uncontrollable facial and head hyperhydrosis...not for the RSD/CRPS. I did not know at the time sympathectomies were not advisable for RSD/CRPS as I had not yet seen Dr. Robert Schwartzman in Philadelphia. So, in 2007 and 2008, I lived in Los Angeles away from my husband and four-legged family in Connecticut, and had these surgeries, as I was too unstable to go back East. I returned home in late 2008 and made an appointment with Dr. Schwartzman for 2010. While in Los Angeles, I developed Gastroparesis and lost about 60lbs from vomiting up food and I developed a neurogenic bladder. This was all part of a spread of the RSD/CRPS, which continued through until today. At this point, my brachial plexus, both arms, both hands, back, hips, right knee, and both legs from below the knees (including my feet) are affected by my RSD/CRPS. I am currently on an opioid regiment that I would like to get off of to get on LDN and Ketamine Troches with Ketamine Infusions spread out to combat this vulgar disease that has altered the course of my life in both good and bad ways.

How has it affected your life?
RSD/CRPS has affected my life by making my foot too large for women's shoes, which really angers me. I have to wear men's shoes and shop the men's department, which I really resent. Though, I now wear women's size 12 which I recently found a pair of dress shoes in, that came in two colors, so I ordered both colors…low heels, obviously. It affects my whole life, just as my other medical conditions always have. I have to live my life around an alarm clock for medication and eat accordingly (or not) if my Gastroparesis is acting up. Although, you learn to adapt strategies that make even vomiting efficient, funny enough.

Do you have a good support system?
I have a fairly good support system. I have a most best friend in my husband, who believes in me probably more than I believe in myself. He sees strength and heart in me that I am not sure I see or feel. Sometimes I do, but sometimes I question it. Am I really all that he sees in me? There are times when I definitely recognize myself through his eyes, but then there are times where I am more critical of myself than I should be. I feel like I am really fortunate to have married the man I did, as he is my biggest cheerleader and greatest supporter and spoils me wonderfully! Every woman should be so lucky to have a Gregory in their life. I also have many wonderful friends who I have met through online support groups that have become like family to me. There is a saying that “Family is not the one you are born into, but the one you choose.“ I can identify with that very much as I have grown to love so many of these other RSDer's across the country that I speak to on a daily basis. There is nothing I would not do for them. I am close with my father as I lost my mother z”l in 1999, but he does not know how to deal with my illness and only could when my mother z"l was around. So, I leave the support up to my friends when I need it. I rely on my husband for it the most. He is my rock.

Does faith play a part in your struggle?
Of course it does! I do not know how it could not. I am a fairly observant Jewish woman who strongly believes in Hashem (G-D). I do not think I could have gotten through my life plagued with illness and challenges, if not for my strong faith and belief in Hashem. So, my answer is a resounding Yes!

How have you reinvented yourself?
I suppose you could say, throughout my whole experience as a person living with illness, that I have constantly had to reinvent myself. I have learned to live my life within the constraints any particular illness has put upon me. For example, I was never permitted to take physical education in high school as sports could lead to a bleeding episode, but I had to take something to fulfill the requirement so, instead, I lettered in both Soccer and Track & Field by serving as the Team Manager for three years of high school. I make lemonade out of lemons. With RSD/CRPS, I have jumped in and gotten very active in the online community.

Has any good come from this trial?
While it has been a long road for me to hoe, I have learned quite a bit, become an advocate for others, and started a support group on Facebook; thereby, taking the focus off of myself and my pain. I have to say I would not be the person I am today without RSD/CRPS. So, while I am not grateful for it, I am grateful for my life as it is. So, yes, good has come from it. There is now another support group for others to go to. There is another advocate for people to turn to. Finally, there is another person to effect change for people living with this wretched disease.

What do you miss the most?
I have grieved all my losses, so I do not focus on the cannot's. I only focus on what I can do. It seems to me a waste of my productive energy to ponder what I cannot do, as it is not relevant anymore. Focusing on it will only bring me down. I believe each person has to walk their own path on their journey. If some people benefit from focusing on what they miss, then all the power to them. I find it unproductive for myself, so I do not remember or know what I miss. I enjoy what I’m doing now and choose to focus my attentions there.

What do you want the general public to know about your disease or you?
All I can say is to please never judge a book by its cover. You never know what invisible disability someone may have. So live your life with sensitivity, as you cannot see so many illnesses. When someone says they are in pain, do not disbelieve them because they do not look like they are in pain. Pain does not look like any one thing. It has many faces, shapes, sizes, and forms.

Thank you for reading my story.
Dana Elise Singer
aka Callie Sloane

Thursday, March 14, 2013

RSD Interview With Sonja L. Combs

HOW AND WHEN DID YOU GET RSD?
I developed RSD after I had gotten into a series of car accidents. They knew immediately that I had it after the wreck I was in on January 6th, 2010. I've had RSD for over 3 years. I try to stay involved in the community, but have found it more difficult since I developed concurrent Primary-Progressive Multiple Sclerosis. Everything is hard. I just got out of the hospital a few days ago. I have been in and out of the hospital frequently with many things that the doctors can't even explain why I have them.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD and MS have affected every aspect of my life. My father kicked me out on the street when I was too sick to even care for myself. Without Rob, I don't even know if I'd be alive right now. I find it extremely difficult to care for myself. I'm 23 and I draw SSDI and get Medicare (parts A, B, and D). I always pictured myself graduating from college or having kids, but I'm not sure I will accomplish either. I've been diagnosed as infertile. I was diagnosed as infertile several times, but I was 16 when I first got that diagnosis because I have many problems with my "baby machine". RSD has had some positive effects on my life also. I'm more patient now, after waiting so much to see doctors. I also have found a calling in helping others. I was very selfish in my past, but I have changed so much. I appreciate everything so much more; even just my life, in general.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes and no. Rob is great, but my family has not been so great. My doctor took my dad in his office and yelled at him for treating me the way he has. My family and I have made positive strides, but I find it hard to forget people who have created struggles for me when I was going through a lot.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Absolutely! I could not live my life without faith. In the end, I have to trust God's plan for me and my life.

HOW HAVE YOU RE-INVENTED YOURSELF?
Well, everything I do is harder, so I have to consolidate what I'm doing to conserve energy. I'm still finding my place in this world, but I just know God has a plan for me.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes. I met Rob and he has been everything to me that I wish I could be to him. He’s a great man and he’s so good to me. Also, I feel like this trial has changed me for the better.

WHAT THINGS DO YOU MISS THE MOST?
I miss not being in pain.
I miss junk food.
I miss not having to think about things before I do them.
I miss being able to follow through on plans.
I miss WORKING.
I miss college.
I miss a lot of things.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
"I don't have any reasons. I left them all behind. I'm in a New York state of mind. It was so easy living day by day. Out of touch with the rhythm and blues. But now I need a little give and take. The New York Times, the Daily News." -Billy Joel (my personal hero) wrote this song. It is so easy living day by day when you are happy and you have nothing holding you back. It's easy when there are no blues to write about. Things can change so fast, though. Your whole being can change so drastically. I don't think the public realizes how hard it is to find that place where you fit in after so much tragedy. When your whole life changes, you need a little give and take from the people around you to find where the new you fits. I have really struggled with it. No matter where you are in life, it's extremely hard to have so many changes happening so fast. The best advice I could give is…cherish the smiles; live for the laughter; have fun whenever you can; pick your battles; rejoice in your accomplishments; don't revel in your failures; don't forget God; most of all, don't forget who you are. Don't let yourself get lost in this hell we like to call RSD.


Wednesday, March 13, 2013

RSD Interview With Noelle Lopez


HOW AND WHEN DID YOU GET RSD?
In March of 2001, I slipped and fell down a flight of stairs, causing an ankle fracture. Over the next three years, I had six corrective surgeries. After the last surgery, the expected recovery did not happen. I developed severe burning pain, swelling, and had color changes in my left leg and foot. Suspecting I could be developing RSD, my ankle surgeon placed me in rigorous physical therapy and began the Neurontin protocol. Despite this, I did not improve. I was referred to a pain management specialist and anesthesiologist, who diagnosed me with RSD at the age of 24, on my birthday in February of 2004. Since then, the RSD has spread into my hand, arm, and upper back on the same side.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD has affected my life in so many ways. I now live with unrelenting pain 24/7. It's like an annoying side kick that never leaves! I must plan my life out in advance. I have endured numerous Stellate Ganglion and Lumbar Sympathetic Blocks, medications with unpleasant side effects, grueling physical therapy, and spinal cord stimulator trial, surgery, and revisions. I now struggle with anxiety when my pain levels are high.

Finishing college, working, and having a busy social life are all things of the past. I've accepted that right now I can't do those things, but I never give up hope that I can do them once again.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have an amazing support system. First and foremost, my husband and best friend, Alberto. He is my rock. We met about eight months after my diagnosis. He's been with me through it all, and I couldn't imagine life without him. My parents, also, are a huge source of support for me. Anytime I need help with basic day to day activities, like grocery shopping, they are right there to help. My entire family and friends have supported me since day one.

I must give credit to my dog Bear; ninety pounds of pure, furry love. He knows when I'm flaring, and won't leave my side. Finally, I want to mention my pain management doctor. He is an incredibly knowledgable and compassionate doctor who has provided me with excellent care since my diagnosis. I'm so fortunate to be surrounded by such caring people!

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I am not a religious person, but believe in peace, love, and kindness. I do have hope that one day we will know more about what causes RSD, and better treatments, or even a cure, will be discovered.

HOW HAVE YOU RE-INVENTED YOURSELF?
I enjoy lending support to others with RSD, spreading awareness, and fundraising for RSDSA.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
If I were answering this question several years back, my answer may have been different. Today, after living with RSD for nine years, I can say a lot of positive things have come from this. I have learned to truly appreciate the small things, and let go of the negative in my life. I've discovered an inner strength I never knew I had. I consider myself an RSD Warrior. You have to be strong to endure what we go through on a daily basis. I have also connected with some amazing people through RSD support channels. One of the best things that has come from this is the strength I get from knowing I can persevere despite being dealt a very difficult hand. I've made it through things I never imagined I could (before my diagnosis).

WHAT THINGS DO YOU MISS THE MOST?
The number one thing I miss the most is the ability to be spontaneous. I no longer have the luxury to do things like go out to dinner or see a movie without planning several days in advance. When we do go out, I must make sure I have my medications, stimulator remote, comfortable clothing, etc.

I also miss working. Although I do part time work mainly from a home office, it is not satisfying or what I had planned for my life. I've always had a job, even working full time in high school. At the time I got injured, I was a pharmacy technician and pre-pharmacy student in college, with aspirations of attending pharmacy school. Now, when I hear my husband or friends complain about long days or problems at work, I envy them. You never know how lucky you are or what you will miss until it's ripped away from you.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want the general public to know what RSD is, and how it impacts my life and the lives of my family. I want them to know that I struggle every day and life can be very hard. Despite this, with the help of my support system, I can persevere, and have some semblance of a normal life. Finally, I would like everyone to know that I am strong and I do not let RSD or what it's done to my body define me. I am not a victim.


Monday, March 11, 2013

RSD Interview #41 - With Michele Gennarelli




HOW AND WHEN DID YOU GET RSD?
In the winter of 1997, I slipped in the snow, on a small embankment, and landed on my elbow (ulnar nerve). Then, in the summer of 1997, I had severe burning (neuritis) in my left wrist. After failing steroid injections to my wrist, I was diagnosed with RSD.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Due to the fact that I now have full body RSD, I am unable to continue my work as a Registered Nurse. I have never owned a dog in my adult life. Now I am the proud “puppy mama” of my boy Po. We bought this dog so I wouldn’t be home alone all day. He naps with me, we go on long walks during the day and he is never more than a few feet away from me! Being home and not working 50-60 hours a week as a Nursing Administrator has been a blessing, for the most part. My son and I had been on our own since he was 5 months old. Working the hours that I did left me with no time to attend events at his school, chaperone a field trip, or even go to school and surprise him by having lunch with him! These are a few of the pros. The cons are many. The biggest one is losing my financial independence and my health insurance! The constant pain goes unsaid. The cost of medications was enough to break the bank! Luckily, I was able to obtain MA this past fall. While a major blow to my ego, the money saved by not having to pay for my drugs/healthcare is a real blessing. I am not able to enjoy most of the things I loved to do. Working in my big yard and in my flower beds sets me up for major pain, so I just do a little at a time. Most of my hobbies are gone. I sleep a lot. My life is a shell of its former self.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I do. As I mentioned above about my son and I being on our own, that isn’t so now. About 4 ½ years ago, I met an amazing man! He takes such good care of us! He is kind, loving, and (most of all) supportive of me and RSD. My son is 10 and he worries about me. He is always wanting to know if I need anything. He is great at running things up and down the stairs. This child is the reason why I breathe, why I push myself, and why I am still on this planet!

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Sometimes. My walk with the Lord used to be so much closer. I am angry that I have this disease but I accept it. I know that when I die I am getting a brand new body and there will be no more pain!

HOW HAVE YOU RE-INVENTED YOURSELF?
Not sure I have… see above…

HAS ANYTHING GOOD COME FROM THIS TRIAL?
No… not one single good thing!

WHAT THINGS DO YOU MISS THE MOST?
Walking in the sand at the beach (need an ankle replacement that won’t happen because of the RSD).
- Being drug-free! I take soooo much narcotics that I sleep a lot, so what I miss is being active.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
Just because I don’t look sick, don’t make rude comments when I park in the handicapped spot!



Saturday, March 9, 2013

RSD Interview #40 - With Monica Ashmore Huntsman


HOW AND WHEN DID YOU GET RSD?
I was in a car accident on September 20, 1997. I struck my knee on the steering column. I only received a bruise on the knee but ended up with RSD. Then, in January 2010, I fell on my back porch and severed a tendon in my left wrist. The subsequent surgery caused the RSD to spread to my left wrist and hand.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
This disease has affected every aspect of my life. I can no longer wear pants. Even in the winter months, I have to wear shorts because the movement of fabric over the knee is excruciating. My kids have had to do many of the chores that I am unable to do.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I don’t really have a good support system. I am a single parent to three teenagers. I don’t really have any friends or anyone that is close to me except my girls.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA? My faith has been a struggle for the past three years. My church has turned its back on my family. Currently, we do not attend any church.

HOW HAVE YOU RE-INVENTED YOURSELF?
I really haven’t re-invented myself.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
The only thing good to come from this is the wonderful people I have met through Facebook, that offer support through kind words.

WHAT THINGS DO YOU MISS THE MOST?
Being able to do things by myself, i.e., not having to rely on anyone to do things for me. For example: dressing, showering, putting up my hair, cooking, opening jars, etc.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
That RSD is a real illness. It is not in my head. I do not make up the pain and lie about it. This is a debilitating disease that affects everyone differently. So we don’t all require the same treatments.


Thursday, March 7, 2013

"RSD INTERVIEWS" STATUS

I have been truly blessed by this project, by all the stories that were shared, and every individual who participated. Though it saddens me to stop the interviews, I must do so in order to complete the book for publication. My plan, therefore, is to accept interviews through March 15th, 2013 and then resume formatting the book.

I recently requested that you send me a separate e-mail, giving or rescinding permission to publish your story; to which, only a handful of people replied. Please understand that this is for your protection, rather than mine. I am protected because, on one hand, the submissions were voluntary, and, on the other, because I made public posts stating this was an awareness project and that the stories would be published in a free e-book called SHARING THE PAIN.

If you have changed your mind about including your story in the book, please let me know by March 15th, 2013. Notifying me after publication would be too late to make a change.

Thank you for participating in this awareness project.  May it have great effect.    

Sincerely,

Mary Jane Gonzales

Tuesday, March 5, 2013

RSD Interview #39 - With Tracy Block Zuckerman


HOW AND WHEN DID YOU GET RSD?
I was driving in my neighborhood fifteen years ago and I was in an auto accident. The airbag deployed and crushed up against my left hand, also hitting the right side of my jaw. I was fortunate enough, after being taken to the hospital, that no surgeries were needed and I was released. As I sought out the follow-up for medical treatments, I was lucky that my orthopedist had seen a case of RSD in medical school. So I was
diagnosed just a few weeks after the accident. At that time, I had never heard of RSD and was told to explore a variety of diverse treatments and consultations, because this was a multi-symptom disorder.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
After learning I had RSD, I went to the public library (the internet was not as available for research and gathering resources, as it is today).  I printed as much information as I could find, sharing it with my doctors and therapists. I then committed myself to raising awareness, by writing articles about my experiences living with RSD. Needless to say, I became a walking, talking RSD advocate. Learning to live with the illness became a full time job over the years. I had to prioritize, since the quality of my health is very important to me. A doctor said to me once “you will never stop searching“. It is still challenging to flow through the cycles of pain flares and loss of function that make/made an impact on my life. But, then again, I only have to choose to LIVE in the here and now.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
It’s been interesting, since RSD became an uninvited guest. I do have a good support system but that  (like all relationships) requires attention, time and effort. It’s challenging, and it varies, as I seek to engage myself as much as I can with others. I have learned to balance and accept my limitations. Also, self reliance is a tremendous factor; like with anything, it all starts with SELF. I refer to my support system as my hammock. It helps me swing through the cycles and, yet, stay still when needed. My hammock of support is critical to my well being.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I have always had hope; that is what motivates me. Without hope, there is no faith. Over the last few years, I have become more dedicated to balancing my mind/body connection through guided imagery, meditation and yoga. I think it does help me to stay centered and grateful…as well as, learning to accept things at times for the way they are. Having a strong belief system in energetic patterns and behaviors has helped me to recognize my ability to be more intuitive with my own treatments. The nervous system puts off energy in a very confusing way when you have RSD, and learning more about my body’s responses helps to steer the
direction towards wellness.

HOW HAVE YOU RE-INVENTED YOURSELF?
Thinking outside the box has become a motto of mine. As I work towards raising awareness and advocating, there is a very fine line between living with RSD and letting it become the navigator. I prefer to choose my own path or journey. Each day it’s a new beginning, of sorts, as there are new opportunities and new goals to set always. I have learned to trust my own instincts about treatments and medicines, as I consult with my treatment team. Independence is something you spend most of your life seeking but, when you live with RSD, you learn to compromise and accept help, when needed. Learning and exploring what I am capable of every day is imperative so I can move towards better wellness, but RSD sometimes has a mind of its own and redirects me.
I believe in taking baby steps and staying more in the present.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
It helps me look at the world in which I live differently, appreciate what I have, and remain grateful. You learn to live in the present. It’s truly a gift because, at any moment, a pain flare can decide to settle in and change the way I feel and function. There is a strong desire inside me to acquire better wellness, although its frustrating, challenging, and even deceiving. I have learned to let go of the negative things, which do not serve a purpose, and focus in on the positive. For instance, the other day, my doctor mentioned to me that I am a hero, and I thought “why?”. His feeling is that patients living with severe illness like RSD have to deal with facing a major battle every day and we persevere the best we can. It’s all about survival and quality of life. I have been very fortunate to have compassionate doctors and therapists treat me for long periods of time but, like everything in life, there is always change. And now some of my treating team are no longer treating patients or have moved away. Therefore, I have had to seek out what is in my highest and best interest, as I remain open minded to new things. Learning to trust myself and keep a good hammock of support around me is imperative. It’s so important to be totally engaged and actively an advocate for my own health care. It’s probably one of the longest, most tedious, learning lessons in my life. I have learned to preserve my own energy and use it wisely, each and every day.

WHAT THINGS DO YOU MISS THE MOST?
Being very athletic and participating in a variety of activities has been a very long process to accept, and also recognize that there NOW are boundaries, set by my own body. The challenges have challenges, and simple things become more difficult. As the years have passed, I still try to regain strength and explore new options. My mind is helping to guide me into accepting what the body needs and wants. There are so many things to miss but I look forward to lower levels of pain and getting back more function. Those become more important than the what ifs??

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I have been so fortunate to receive a variety of treatments and therapies, most of which are not covered by insurance. But it is still not enough. There needs to be a greater understanding and integration of alternative treatments and main stream medical ones. I am extremely dedicated to understanding and learning about everything I do and every medicine or supplement I take. I am truly my own best advocate. As a human being suffering with a long-term chronic pain illness, I have had to overcome a lot. We need to provide better care and more attention to chronic pain & RSD. Our society is not tuned to the correct channel. More comprehensive healthcare is a critical concern. Medicines, supplements,  treatments, therapies, doctors, therapists...all play a part in treating each of us as unique human beings. Personalized health care is what is needed, as well, for RSD since it is a multi-symptom disorder requiring a very diverse health care regime. Health is truly the greatest wealth one can have. PLEASE ADVOCATE AND RAISE AWARENESS WHEN YOU CAN.

Wishing you wellness,
Tracy Block Zuckerman


Monday, March 4, 2013

RSD Interview #38 - With Megan Noonan


HOW AND WHEN DID YOU GET RSD?
I was injured in October 2011. At the time, I was working in the dairy on the farm, trying to fit milking cups to one of the cows. Her name was 'Angry Cow' for a reason. The cow flicked her leg up, striking my forearm. It broke the skin and by the time I got home, back in town, it was swollen and my whole arm and hand was turning purple. In pain and wanting answers, I spent nearly every day at the hospital, which was 40 minutes away. No one could tell me what was going wrong. It was a very depressing, stressful time. I went from working two jobs to nothing. I couldn’t sleep (due to pain) and all they would do was up my pain medication, which did nothing. I also had an employer who was bullying me, trying to get me not to report the incident, as he had no insurance. My physiotherapist was the only one who listened to me. She would not touch my arm and told my doctor she thought it was RSD, but he disagreed. So, many tests later, I still had no answers. I moved back to the city for treatment  in February 2012  and was finally diagnosed about mid 2012. It has now spread to my shoulder and I worry that it will go further. I am currently undergoing counseling to adjust to living with RSD and am also discussing further treatment options with my specialist.
I ended up being offered a Workers’ Compensation payout, which I regret taking, as it only covered my medical bills and I have been left out of pocket. At the time, I did not know RSD was incurable, so I am devastated that I took the payout.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I lost both my jobs. One being the only job I have ever loved, which was working on a farm. It was hard, stinky, work for little money but I really enjoyed it as every day was different and, strangely, it didn’t feel like work. I’d be feeding the calves, riding the quad bike, working in the dairy, clearing paddocks, etc. We had discussed many other farm opportunities and its disappointing where everything has ended up…even affecting other job opportunities and social ones, as well.
Leaving a beautiful, quiet beach town to move back to the city has been a very hard adjustment. I still struggle with city life everyday.
Weather is a factor, as I can’t stand the heat anymore, and coping with cold weather is a lot harder.
I cant hold my son’s hand with my affected hand (and that hurts the most).

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have a very good support system but I sometimes feel very alone, even though I’m surrounded by people, as they don’t understand my pain or what is going on. I struggled to cope when I found out that RSD is incurable and can spread, etc, So it was such a relief to find the online support group and speak with other people who are living with RSD. They have been so informative and have also helped with cognitive therapy. They have taught me to live life one day at a time, and have really put my mind at ease.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I have faith, as they said I would not be able to open my hand but I can. I still drop things occasionally, which can be frustrating, but, even though it is painful, I will continue to work through it.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have yet to re-invent myself, as the doctor will not clear me to study or look for work.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

WHAT THINGS DO YOU MISS THE MOST?
Country life and having so many camping, fishing and beach options.
Working.
Sleep.
Everything about the life I had.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
It would be great if people actually took time to find out a bit about RSD so they would understand that I’m not over-reacting when they brush, knock, etc, my arm or hand. It would also save me from explaining it every single time. It’s depressing, as I worry every day that it’s spreading.
I am in constant pain, some days worse than others. I might 'look' ok but, if I had the option to remove my arm, it would be gone.

Saturday, March 2, 2013

RSD Interview #37 - With Kim Roberts


HOW AND WHEN DID YOU GET RSD?
In May of 2012, I had surgery to remove Plica from around the kneecap. Yet, afterward, I was in constant pain and the doctor said it was from built up scar tissue, so we decided to do another surgery (to clean it out). Very simple, or so I thought. On January 24th, 2013, I had surgery. And I woke up in recovery, screaming and crying in pain. They were giving me Dilaudid and that wasn’t even helping. They called anesthesia down to do a nerve block, I was good to go after that J A few days later, I woke up and my foot was numb and felt like I had a thousand needles poking me in the foot. It felt horrible. The next day, I went for my post op appointment and the doctor said it was probably from the nerve block. It continued throughout the week and, by Thursday, it was both my foot and my calf. They started turning purple and splotchy, and hurt so bad. They were so cold, it felt as if I had been sitting in a tub of ice. Fearing it was vascular, I called the doctor and they brought me into the office. They told me it wasn’t vascular and I had good circulation. That was when she said those horrible words “It's RSD”. L

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It has drastically changed my life. I am unable to bear weight on my foot, due to pain. It feels as if I'm stepping on broken glass or knives slicing my foot. It is the worst feeling to not be able to get around and do certain things for yourself. I'm stuck on crutches, and some days I just want to scream!

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have an amazing support system. My husband has been so supportive.
However, even with a good support system, it doesn’t make it any easier to deal with this.

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

HOW HAVE YOU RE-INVENTED YOURSELF?
I am newly diagnosed with this monster. I am barely learning to cope with it. I am sure, down the road, I will find a way to re-invent myself but right now I am still so angry.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I think it is going to help raise awareness of this disease and help show others what we deal with on a daily basis.

WHAT THINGS DO YOU MISS THE MOST?
I miss playing with my daughter, going dancing, and walking, most of all.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
This disease isn’t just in our heads, it is real!! We deal with so much pain on a daily basis that most people couldn’t begin to imagine the feeling. Some days the pain is so bad that you feel like you're on fire, or that you're sitting in a tub of ice, not being able to function.


Friday, March 1, 2013

RSD Interview #36 - With Deanne Mediati



HOW AND WHEN DID YOU GET RSD?
My RSD began in April 2009. We were enjoying our Easter Sunday, having a barbeque at my daughter's house. They own a very old fashioned, heavy, iron, patio table set. My son was sitting in one of the chairs. He was propped up forward, and I walked right into the leg of the chair at the same time it came down (on my foot). I pulled my foot out very fast and said "Ouch that hurt", then forgot about it until four days later, when a friend came over and noticed that my foot was swollen, bruised and very sore. I went back and forth to the doctor's office and the ER that whole summer. I had more than one x-ray. I, also,had an MRI and all these showed nothing wrong. Then I saw a new doctor and the first thing he said to me was "that looks like RSD". I asked what it was. Then I went home and looked it up on the internet and, sure thing, I had every symptom. That was the start of my journey.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD has affected my life tremendously; everything has changed. 

-I used to work and go to college. 

-I used to drive. 

-I used to walk normal and wear both shoes. 

-I raised my three children alone by working as a hairdresser for twenty five plus years. I am a strong woman, but this stuff has got me down.

-The RSD has spread up my leg into my knee. The pain and the       coldness of my foot are hard to deal with. 

My life has not been the same, and I am a totally different person now.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I kind of have a good support system. I have struggled with depression because of this subject. Being a single parent to my kids, they had a very hard time getting used to me being this way. Though, they are much better these days. I had a boyfriend but he broke up with me the day I found out I had RSD. My support system is my family, God, Facebook and all my RSD friends. Without their support,  I would be lost.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I cannot live without God and faith in my life.


HOW HAVE YOU RE-INVENTED YOURSELF?
I am trying to re-invent myself. I am a student at American River College and I try to keep my mind occupied with other things, instead of the pain. I have three grandkids, whom I love tremendously. They keep my heart happy.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I have grown to know God and myself a whole lot better.

WHAT THINGS DO YOU MISS THE MOST?
I miss a lot of things:  walking normal, driving, dancing, working, doing hair, and being independent.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want people to know that this disorder is no joke. It can happen to anyone; young, old, or in-between. I find it interesting, the coldness among the symptoms (though I don’t have bad circulation). My brain got tweaked when I hurt my foot on the patio chair. Before that moment, I was a normal, single mom, who had an active life. This took me down so low, I had to fight to get back up. The process has been slow. I ask the public to not judge anyone who says they are in pain, as it’s not funny. And, always remember, it can happen to ANYONE.