Jennifer Groves

Jennifer Groves: Volunteer Staff and Facebook Admin

Jennifer Groves: Volunteer Staff and Facebook Admin

My name is Jennifer, I am 36 years old and live in New Jersey. I was diagnosed with CRPS on 7-8-2013 after five years of many ER visits and multiple repetitive strain/sprain injuries to my left knee and neck. At the age of 11 I was also dx with Lyme’s disease which destroyed my joints and impaired my short term memory. Three years later I was curious as to see what the inside of a squirrel’s nest looked like 60 ft up at the top of an old oak tree.  I fell out of that tree landing on the left side of my body. I was left with only a concussion and was able to continue my childhood as active as any other. I played multiple sports and with my 3 other siblings. I have have had problems with my joints being hypermobile my entire life and dealt with my knee caps popping out and knee sprains all too often. In 2008, I incurred the dreadful knee sprain I would never recover from while working at the Rainforest Cafe waiting tables. This is where my journey began, seeing more than 30 physicians, over 100 lab tests and so on. I also since then have been diagnosed with Fibromyalgia, Mixed Connective tissue disease with more of the Lupus complications, and Raynaud’s ( very interesting color effects). I wouldn’t change an instant in my life. I believe I am exactly where I am supposed to be and so glad to have met so many supportive people in the CRPS community that I absolutely love, I wouldn’t have met otherwise.

 I live with my son Austin who is 12 and my boyfriend Jeff. Austin has special needs and keeps me on my toes to say the least! I do not get support from my family other than my father and this tears at my heart like no other pain. RCDOM was a force that pulled me out of a place of loneliness and despair and enabled me to find a voice to be able to do the same for others who feel lost and alone who are diagnosed with a chronic illness and don’t know where to turn. I have never felt so ill in my life and yet so empowered to not give up and take control and at the same time spread the word that “You are never alone,You are strong, and Yes you can!”

Volunteer Staff and Facebook Admin

Kylee Black

Kylee Black: Administrator, Support Advocate, New Zealand Rep, and Founder of Spiritual Sparkplugs

Kylee Black: Administrator, Support Advocate, New Zealand Rep, and Founder of Spiritual Sparkplugs

My name is Kylee Black and I’m a 27 year old girl living in New Zealand.

On the 10 November 2008 I had a kickboxing accident where I partially tore the hamstring and groin muscle in my left leg as well as over stretching the sciatic nerve. RSD appeared pretty much immediately, although it wasn’t officially diagnosed until January… For me the colour changes were immediate and things spiraled out of control pretty quickly… By the time I was diagnosed it has already spread. By March I was bed bound, by May I was diagnosed full body with organ involvement. I had complications in which overnight I lost complete use of my left hand side… I have had to fight hard to regain use and continue to fight for that use… I have had many different treatments, including low and high dose ketamine treatments… The high dose ketamine treatments got me out of being bed bound… Though their availability in my country is no longer…

This is a long as twisted journey… I will not let it beat me… I will continue to fight and push myself… RSD does not define who I am… I am determined to stay positive in this and do what I can… I want to make a difference! Together united we can beat this disease! We will win!!

For more info visit me at my journal site: www.caringbridge.org/visit/kyleeblack

Administrator, Support Advocate, New Zealand Rep, & Founder of Spiritual Sparkplugs

Mystery Blog Writer: RSD Lightning Angel

Our Mystery Blog Writer: RSD Lightning Angel

Our Mystery Blog Writer: RSD Lightning Angel

April 3, 2012 I made the bad decision to get up on a ladder without a spotter to clean my gutters!  I fell with the ladder spraining the ankle I landed on and breaking the leg that got twisted with the ladder during the fall(the right leg).  The pain began within days of the injury but I was assured it was normal despite my unusually high pain tolerance.  Looking back it makes sense why I was through the ceiling when he would cut a cast off while normally, no one else seems phased by cutting their casts off.  This went on for over a month when I finally insisted something was wrong.  The scans revealed extensive blood clots in my right leg and also many large ones in both of my lungs.  I was then in the ICU and they put a IVC filter to prevent more clots from going to my lungs.  During my physical therapy and failure to progress it was determined by MRI that I had bone loss and changes indicating RSD.  I began seeing another doctor who tried many meds, most of which I did not tolerate well, but they helped some for the time I was able to take them.  I then had a nerve test done to see how the nerves looked.  As I suspected by the type of pain, I have some nerve damage in that leg.  We will soon see if it is reversible.  That brings us to where we are now!  Stubborn and determined that despite having RSD, not letting RSD dictate how I live my life!

Our Mystery Blog Writer

Judy Halas

Hello, My name is Judy Halas. I am a 49 year old woman who has been afflicted with CRPS/RSD for seven years now . I developed this neurological pain disorder from an injury I sustained at my nursing job. Let me tell you what it’s like to switch roles from a nurse to a patient. It is probably one of the most enlightening experiences I have ever had, besides motherhood that is. I lost total control of myself. The pain was so excruciating that I had wanted to end my life at different times throughout this five year battle. I underwent ever known treatment and therapy that I could get my hands on to try and halt or reverse this horrible disorder. I was only able to make small advances and not one thing really worked well for me or lasted very long. My spirit began to fade. I had lost my ability to think clearly and independently due to the medications I had to take. I lost the will to keep a positive attitude and push on. I had to give up my 20 year nursing career and again I lost part of myself. I’d like to tell you what I have gained ! I have gained a sense that I am not any less of a person now because I am disabled. I have gained so many great RSD angels in my Life. I met Christa, one of our page founders through a support website for CRPS. It really changed my life. I finally took a long look at all the young people afflicted with this disease and saw how they had learned to overcome and endure the pain. I grew stronger by listening and understanding their intense will to not give in or give up. I learned that this disease does not define me. I am still a strong, loving and giving person despite my handicaps. I walk with a limp, slower and not as far. I sit longer and not as comfortable. I have had to change nearly every aspect of my life because of RSD/CRPS.

I have seen what it is liked to be looked at strangely for parking in a handicapped spot because I don’t look sick or handicapped. I know what it is like now to be judged by your peers and family for not measuring up. I have the new found knowledge of how to be even more empathetic and more accepting than I was prior to this change in my life. I have learned that my own feelings and my pain is my own . I can’t expect the rest of the world to understand what is is like to live in my body for a single minute. I have joined forces with these wonderful founders and administrators of this site to make others more aware of RSD/CRPS . In hopes that one day we can find a cure so no one else has to suffer . I don’t want to have to tell people what I have and see their blank stares because they have never heard of this before. I don’t want to have to teach my therapists, doctors or caregivers how best to treat me. I want them to know this already! I would like to take this opportunity to thank my loving husband and CRPS family for helping me push through my pain and find “positive lights” in my life.

Administrator, Retired Nurse, and Support Advocate

Christa Whightsel

Christa Whightsel is a 25 year old from Ohio. She has had RSD/CRPS for five years and each day is a struggle.

Christa Whightsel: Creator, Co-Founder, and President

Christa Whightsel: Creator, Co-Founder, and President

Christa was injured while taking the trash out at work one day and that injury from the trash cart running into her caused her RSD. She is currently living at home with her family.. She likes to stay busy as a Nanny and hanging out with her Amazing Friends and her Wonderful Husband Joey.

Living life with RSD has changed everything for Christa. For a very long time she was angry till she realized that being angry was only hurting herself. It wouldn’t change her situation, and it wouldn’t take away her pain, or bring her a cure. Half the battle against RSD/CRPS was her attitude. It is hard when you are in the worst pain imaginable to pick yourself up and tell yourself that life is worth living, when at the moment it doesn’t feel that way.

Christa believes she was put on this earth and given these struggles to allow her to grow and become the person she is today. She also loves to learn from others and grow with them. It is so important to support your fellow human being, because we all go through pain physical, mental, or spiritual, just not all go through all the above 24/7 365.

She feels like just like you, she knows her limitations but she has goals, dreams, and fears. She wants to live her life, despite the pain. It is very hard, grueling at times, and, truthfully, hard on her health, but that will not stop her from loving and living life.

All this helps her keep on bringing happiness and hope into the lives of her fellow RSD Angels. So in order to spread more awareness and RSD Angel Hope she decided to start a Support Group and Non-profit Organization (Still in the works,) called RSD/CRPS Doesn’t Own me.

She is grateful to God for allowing her to be able to live life to the fullest and to have met all the amazing people she has.

Life is always worth living and Christa lives by this mantra, “Reach for the Stars, eventually your arm will stretch. If you fall short, reach with another person, even then you are that much closer!”

http://kissafightingfish.blogspot.com/

Pull from her profile on the volunteers page (out of date based on dated submitted)


Original Testamonial:

I am starting to think my body has a mind of its own.

When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. They called a squad but when they came, but they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn’t call the squad at all.

My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to trying to probe out  that I wasn’t really blind. I walked into a sharp edged table and put a gash in my knee. She still didn’t believe me.

This went on for 7 months, no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by my excess fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Cerebri which is a buildup of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves.

I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn’t a cure for that either but there is a high rate of remission. I went in and out 2 times finally in remission for a while.

Flash forward to April 7th, 2008. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced the weekend before and they threatened my job if I didn’t take it out. I almost wished I had walked away but hey….anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart….big no no. It went rouge and ran into the back of my left heel….I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out.. The blood in my shoe wasn’t customer friendly so they let me go home but I went to Urgent Care. They said I sprained it and it might be something else but to follow up with a different Dr. So I did.

I went to a “mouse” of a Doctor he put me in a walking boot. My foot started hurting….more then I would think a torn ligament and a sprain would be. I kept telling the Doctor but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace…..he went to look at the swelling in my foot and he barely touched it and i flinched and pulled away. He finally said, “It might be RSD”, but nothing was really said after. I stayed pretty laid up and bed ridden for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn’t getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had was RSD. I was so pissed and frustrated by this time that I wanted to spit.

My mom talked to a Doctor friend of hers and he pointed us in the direction of the best RSD Doctor in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympathetic Nerve Block and did different narcotics. I ended up in the hospital after the Nerve Block with double the pain. They gave me 3 rounds of dililudid before I could stand the pain again. So about November of 2008 he finally said that I should get a Lumbar Stimulator or also called a Spinal Cord Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain. It works to a degree but I still got about 70 to 95% pain most days. I got it in January 2009 and around May 2009 it died and wouldn’t recharge. So finally in October of 2009 they gave me surgery to give me a replacement battery that didn’t have to be recharged. Since the start of my RSD it has spread from just being localized to just my left ankle to now it has taken over my whole left side of my body.

People always ask me if my life is still worth living because of all I have been through. Of course life is still worth living. I have met so many people after I was diagnosed with RSD. In July I was married to the love of my life, Joey, and I wouldn’t take back a day I have spent with him. He truly is my rock and my strong hold. Then there is my friend Krista whom I started this organization with and I love her just as much as anyone could love someone. Then there is Flora who has been my sister in every sense of the world except for blood. She picked me up when I hated myself and taught me to see the positive in life and not the negative, and for that I thank her.

These are all people I wouldn’t have met in a million years. Also RSD/CRPS Doesn’t Own Me wouldn’t be also. It is my baby and I never realized it would blow up as big as it has. It keeps me hopeful that someone else who has been diagnosed with RSD/CRPS will find and hear about the information that we try to put out and goes into remission all the faster. We want to see that happen to each and every person afflicted with this horrid disease. We want to see every person’s family to support them and try to understand because without support we feel lost and hopeless.

I am so glad to be a part of this wide world of awareness and I pray that I will continue to be a part of it!

Creator, Co-Founder, and President

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