During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media. I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released. Let me explain:
I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan. I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with. People saw me with a nebulizer and now think I have only Asthma. Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially; many people are assuming things that shouldn’t be assumed. None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses. Several persons have told me that they “wish they only had what I have”. Others have said that “they wish they could do more & be involved more, like I am able to do “.
My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including: a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI. In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome” (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS. After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.
In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension,
In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy. Though, I did not have a Mastectomy.
The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.
I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!
I’m not the only one! There are so many chronic pain warriors with a list as long or longer! I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have: hand braces, arm sleeve covers, 2 knee braces, 2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.
This is my story…. it’s the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).
I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report. I also founded & run a few support groups for chronic pain & RSD/CRPS. I’m also a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients). I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA. Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!” (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)
In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this.
Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”: https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595
I am writing today about a topic that I had hoped to never write about. But it has come to my attention and the attention of several support group leaders on Facebook; that there are imposters trying to infiltrate our support groups. This is a sad story and one that should never happen. Anyone who runs a support group for any illnesses, including and especially the chronic pain illnesses, needs to be aware of this situation.
I opened up Facebook a week or so ago, only to feel relieved in a way, that none of my support groups were affected by this “fake” person who pretended to have RSD/CRPS. This intruder into the CRPS community had befriended over 600 people on Facebook in over a period of just about 3 years. She started her own support group and then the worst happened. She gained the trust of many people who are suffering with the horrible chronic nerve pain of CRPS. She pretended to have the disease and pretended to have “cured herself”. This is unforgivable and preposterous to say the least. I had no idea about any of this until last week when all of the news broke. Her account was found out about and she disappeared.
She disappeared but not before taking with her dozens of trusted CRPS patients photos and videos. She asked them to make videos and send them to her and photos as well. She wanted these videos to be showing how they “worked through their pain and pushed through it”. She told several people in her support group that on the delicate and sensitive flaring areas of Skin that has been diagnosed with CRPS/RSD; they should rub sandpaper! She wanted photos and videos of them doing this. Also, just to inform you that this practice is horribly wrong and could cause terrible pain, progression of illness and even worse, infections. She told a person to “pull on their RSD/CRPS riddled fingers until the pain was excruciating” and told them that this would “help them cure their RSD/CRPS”.
This “fake” was a well known figure in the RSD/CRPS community for these past few years. She had some telltale signs that I notice right away and thus the reason I vet my support groups very carefully. She had no real photos on her Facebook page and no family pictures or friends. Nothing “personal” stood out, from what I hear, on her page. She never showed herself in a video or a Facebook chat or video either. If anyone has ever watched the Television show called “Catfish”, that is one of the biggest clues to being a “fake” or a “Catfish” account. When you befriend someone on Facebook please be sure to check out their profile. Also, it doesn’t matter if they are friends with some of your friends, it can still be fake. Look for the signs of “realness” and of being a true person online. Look for achievements, and milestones, family and other photos (as I stated above) and don’t befriend anyone that you don’t feel comfortable with.
Please understand that most of the support groups are wonderful on Facebook. They are run by loving and caring patients living in pain also. Feel free to check out the group admins. pages also. Look them up and see who they are and if they are shown as having a true Facebook account as well. Feel free to ask questions before you join a group, to see what the person believes about your illness(es). Check to see if you believe in the same ideas, or not? The people living in the pain community have seemed to me to be so caring and always wanting to help a fellow sufferer. I think this is where the story gets so dark, because this “fake” person tried to gain the trust of people who are kind and caring and suffering. We are all trying to make sense of these illnesses and the pain that they bring, how could anyone “pretend” to have something and then hurt people who’s trust they’d been given freely?
These are questions that I cannot answer nor fathom. This “fake” person was finally exposed and the authorities were called. There’s not much else anyone can do because she/he or they, closed down their Facebook account, their support group and took all of the photos and videos with them. Wherever they’ve run off too, we will never know. We don’t know if that person will show up again and now people will be afraid and looking around every corner for someone like this; wondering who to trust now? But if you are requested to do anything that you don’t feel comfortable doing, don’t do it. Unless you know someone online and have done a face chat video with them, or met them “in person”; don’t give away anything personal in the form of information, videos or photos. But please don’t give up on the support groups because there are many that are loving, kind and very helpful. I am so thankful that this person did not make it into my support groups. I remember the name and remember “her” asking to be in my groups and I felt hat something wasn’t quite right. I declined her entry into my groups. I declined her friend request. I am just lucky in that respect, because many of my dear friends who are very careful; were still affected by this imposter into our RSD/CRPS community.
I’m concerned for the people who were hurt in my communities. This person was relentless in her “pushing” people to do things that were painful in order to give them false hope of a “cure”. She said that she herself had been cured and that all of the things she told them to do, she had done and this is how she got well. We all want hope and so these people were desperate for some kind of relief. With our pain medications being taken away weekly and more people being denied appropriate pain relief; I can see how this can happen. But just be very careful and don’t give up on the support groups but be selective in your choices.
The CRPS communities are left now with a bigger wound to heal. They feel vulnerable and duped. People are trying to wrap their heads around the idea that their photos and videos are out there somewhere and they don’t know where? Please know that if you were a part of this scam, it is not your fault. The imposter was very “good” at what she was trying to achieve. She was sly and deceitful in her endeavors to trick a community of pain sufferers. Please be assured that the Police have been alerted and Facebook security also has been told about this. There is not a lot that they can do except to try and make sure this doesn’t happen again. We all have to be a part of that! We all have to keep our eyes and ears open without getting too paranoid or hurting more people in the process. Don’t accuse anyone if you are not sure, because that’s happened to some RSD/CRPS patients as well. That has got to be a horrible feeling and it appeared that the people who were wrongly accused have regressed and so we have to be so careful not to be one way or another. Just be on your guard but not overly suspicious of everyone due to this situation.
Here is a link to another article written by someone else regarding this subject: http://www.blbchronicpain.co.uk/news/facebook-crps-faker-pretend/