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My Life Is Not My Own

My Life Is Not My Own
By: Michell Freeman

 

My name is Michell Freeman, I am from a small town in Bennettsville, South Carolina and this is my story. On November 4, 2013 I was in an automobile accident that involved a fatality. I was hit by a car that had ran a red light. I was unable to walk without great pain. When I arrived at the hospital my legs felt very cold and I had lost feeling in my saddle area and later down my left leg. The Doctor came in and told my family that I had a disc fragment that sequestered. The doctor told my husband that I was to lie flat on my back only to get up to use the restroom and if I lost control of my bowel or bladder to call …

 

Share Your Story: Marge Sudbay

My daughter has had this horrific disease for approximately 20 yrs. She suffered for years as her work comp doctors refused to consider RSD. Consequently, no early treatment!  She has severe pain from noises. Her “pain Dr.” told her to wear ear plugs!.This idiot hasn’t read Oaklander’s study showing damaged nerve endings. He also states Ketamine has been studied and doesn’t work. My daughter had this med IV for a few days several years ago with 2 wonderful weeks of relief. The truth is it was expensive & work comp doesn’t want to pay. My positive thoghts & prayers to each. Marge Sudbay…

 

Share Your Story: Ann Lavendar

I was diagnosed with RSD in January of 2002.  Since that time I’ve had more than 40 procedures, ranging from stellate blocks (both through my throat and the more dangerous procedure through my back and around my lungs), RFTC’s (radio frequency thermocoagulation blocks), exploratory surgery resulting in a vein wrap around a trapped nerve which seemed to be the culprit (complication following wrist surgery) and finally three tries at a dorsal column nerve stimulator (two fails and one semi-success).  It spread like wildfire during an especially bad exacerbation of symptoms, from my left hand/wrist, throughout the arm, my right arm,  across parts of my back and side, into my right hip and leg and across parts of my face.  The pain was so terrible that when I did fall asleep, I woke up clawing at my face and arms from …

 

Respond to CDC proposed guidelines

Here is your chance to voice your opinion on how the PROPOSED CDC Guidelines may affect you as a pain patient who needs proper and timely access to care. (this link is the place to submit your comments), there is also a link on the CDC page that brings you to the guidelines, as well it might be a good idea to write your statement in a word document so that you dont lose it, as well as share it here on our page in the comment section on this post. ‪#‎ShareYourStory‬‪#‎RaiseYourVoice‬ ‪#‎MakeADifference‬

Dont forget to send your letter to the CDC… http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001 #AccessToProperCare #MakeADifference #ShareYourStory

 

Here is POP President Barby Ingle’s submission:
National Center for Injury Prevention and Control
Centers for Disease Control and Prevention
4770 Buford Highway N.E., Mailstop F-63,
Atlanta, GA, 30341…

 

Share Your Story: Emily Ullrich

In hindsight, my chronic pain began at around eleven years old, when I started menstruating. My periods were so extremely painful that I would literally pass out from the pain. My mother had painful periods, and so my agony was chalked up to genes, and as I got older, I learned a few tricks to help the pain. As a teenager, I had regular pelvic pain and urinary tract infections, and by the time I was in college, I started seeking answers for my pain. I met endless doctors who shrugged me off with comments like, “You’re too young to have serious pain, I think you should just take Ibuprofen and use a heating pad,” and “It’s normal for women to have pain during their periods.” I continued to seek help over the next two decades, and finally, in my …

 

Raising Awareness, Building Community by Stephanie Christianson

Raising Awareness, Building Community
Stephanie Christianson

The Juvenile Diabetes Research Foundation (JDRF) hosted a series of two 5k challenges here in Atlanta, Georgia. My family and I participated in last year’s 5K held on the 19th at Verizon Amphitheater in Alpharetta, GA, my hometown. We participated in this event because of my younger brothers who are both Type I Diabetics (T1D). My family does not have a family history of this particular disease; moreover, they were diagnosed in an atypical pattern. My youngest brother was the first to be diagnosed at the ripe age of 13, approximately three years later my other brother was diagnosed. It is also important to note I was 18 months into my diagnosis of Chronic Regional Pain Syndrome in my left leg.

While my brothers and I deal with two different chronic illnesses, there is …

 

Twitter Chat on #Mindfulness

On July 29, 2015 the Power of Pain Foundation hosted a twitter chat on #Mindfulness with Dr Lynn Webster, M.D.and POPF President, Barby Ingle. Here is the highlights from the chat.

Power of Pain Foundation – Today we will be led by guest host @LynnRWebsterMD, talking all things #mindfulness & #PAIN, To start things off, @LynnRWebsterMD could you tell us a little about yourself?

Lynn Webster, MD
Thank you to @powerofpain for co-hosting today’s #TwitterChat on #mindfulness I am thrilled to be a part of this discussion. I’m Dr Lynn Webster, author of the book The Painful Truth, coming in Sept, about the need for empathy in #chronicpain care. I’ve been a #chronicpain doc for many years & have worked w/ many patients who have benefited by using #mindfulness techniques. I am grateful we have a platform to get together, …

 

Share Your Story: Stephanie Lynn Christianson; Arachnoiditis

Stephanie LynnOne day in May 2006, out of nowhere I was suddenly overtaken by pain in my knee. I saw the orthopedist, whom at the time was on the fence about proceeding with a surgical intervention. I had the surgery, but the pain never really went away. I left for my freshman year at Vanderbilt University still feeling slightly off. I had been there a month when the pain began to spread gradually to encompass my entire left leg. I was unable to leave my dorm room and climb the stairs and getting food was an absolute challenge. I was 18 years old at that time and terrified.

The third doctor I saw trying to address what was going on finally realized I had Chronic Regional Pain Syndrome (CRPS). The only thing I can remember from that day was the effect it had on my mother who fully understood what this could mean for my quality of life. Needless to say, she was devastated. At that point in time, I was an ostrich with my head in the sand. I found it painful at first to even think about what was happening to my leg. My family worked relentlessly and we traveled the United States looking for a proper intervention and treatment for CRPS.
In the meantime, I was in the middle of my undergraduate career. I had to take off whole semesters because at that point I was unable to function enough to really make the most out of a stellar education. There were even times when I would start a semester and have to leave or reduce my course load. I was fortunate enough my University worked with me and my very unique situation. I will always be grateful to them.

Inch-by-inch, we explored every routine surgery procedure related to CRPS, infusion, implanted device, medication therapy, and holistic remedy. It wasn’t until SkyMall, that crazy magazine with the high prices and crazy objects, and a dud of a visit with a holistic specialist in Maryland to find what we were looking for therapeutically. As we took off, my mother found an ad in SkyMall for the Dellon Institute and quite literally ripped the page out of the magazine. After speaking to the surgeons involved in these techniques and interventions, I found the right match with Dr. Sean Wolfort, MD. After a series of nerve trans-locations (where they moved my hyperactive nerves into dense tissue to trick your body), it appeared I was gaining mobility.

College still posed a problem. There were so many doors and inaccessible areas for those with physical handicaps. It took me approximately 5 years into my diagnosis that I really began to advocate for both the pain community as well as those with physical disabilities. I rely on crutches (a single if it’s a good day, a double if it’s not) and found that posed some very significant obstacles if you were going to pursue rigorous studies. I was finally ready to talk about what I go through in living with CRPS at a young age and the journey I have taken. As such, I looked inside my community, which at this time was the entire University. Those without physical handicaps fail to realize the struggle people have obtaining food when they rely on crutches, canes, wheelchairs, and all other mobility aides. With enough tenacity, I was able to implement a program that helped anyone either in an acute or chronic state that needed help getting the basic necessities. Moreover, I participated on a committee aimed solely on making the campus more accessible. Things such as maps clearly indicating where elevators were in buildings or adjusting how doors open to prevent injury to the person.

This ongoing experience has shaped my life and has motivated me more than one can possibly imagine. Prior to my diagnosis, I was determined to pursue a career as an attorney. Following my diagnosis, I have realized the best way to implement change is to roll up your sleeves and get to work. I have grown tremendously and have accepted some days will be more painful than others. I believe in keeping my goals in sight as it provides me with the fortitude to go on and work through it all. Here and now, at age 27, I have been fortunate to work in a laboratory that deals primarily with pain management toxicology and pursue my doctorate in neuroscience. I am sincerely hoping to bring some degree of relief to the CRPS patients of the world.

Thank You! Stephanie Lynn Christianson

 

Sheila Kim Purcell #ShareYourStory #MS
Sheila Kim Purcell
August 20,1999 was one of the most life altering days of my life. The first was the day I found out, I was going to have a baby. This day was not so joyous as it was the day I found out I had MS. I was a single parent with a daughter in high school, what was I to do, how was I going to tell her?

I had been going to the doctor for months complaining of headaches and numbness in my arms and legs. The doctor kept insisting it was stress, he gave me medication for the headache and told me to rest more. Then came the pain, the best way I can describe it, is it felt like every muscle in my body just ached, almost like having the flu. The doctor again dismissed what I was telling him. When the fatigue sent in, I felt it was time to find a new doctor. I explained all of my symptoms to the new doctor, from the headache, muscle aches, fatigue my inability to concentrate. He ran multiple test and they all came up negative.

He then said he wanted to send me for an MRI and spinal tap, 5 days later he called me and asked if I could come to his office that day. I knew that was not a good sign. He walked in and said the words I will never forget, “Sheila I am sorry to have to tell you this, but you have Multiple Sclerosis”.

I thought my life was over. Over the next several years, I was on multiple medications, in which the side effects were horrible. I almost missed my daughter’s HS graduation due to the pain and fatigue. I cannot do everything I was once able to do by any means as I let MS define me for many years. I have changed my diet, due to balance issue, I have installed grabbed bars in my shower. I try to avoid stress at all cost. I am now a Pain patient Advocate. I tell every person I met with MS you can let MS define you or you can define MS, I chose the latter! As I am writing this I am in a flare, so as you can see MS does not have to control you

Learn more about MS here

 

Medical Drug Delivery Pump; Tenah’s Story

Hello my name is Tenah. I have a Medical Drug Delivery Pump. My MD and I both agreed that this would be the best way to deliver medication for my pain.

I had been taking Kaden for the pain before my pump. I did not like the way the pain medicine felt. I wanted a way to relieve my pain without the side affects of the pain medicine. With having RSD I knew I was going to have medicine probably the rest of my life. I knew my age and the length of time I would have to be on medication I was worried what the medication would do on my internal organs.

Dr Ajith Nair is my MD he is not just a doctor that come in sees you for a few moments. He also helps you mentally and …

 
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