Strangers Among Us


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Hello Luvs,

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/

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Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

The Art Of Learning Compassion


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We are in a group doing role playing above


Beds were brought in for people who needed to lay down awhile. That’s me with the blue blanket on the bed!! Isn’t that so thoughtful, accommodating and awesome? The US Pain Foundation did this for us!
Hello Luvs,

I wanted to write something about my experiences this past weekend when my husband and I went to Connecticut.  I was invited to go to a weekend seminar to learn how to be a “support group leader” and how to host an “in-person” support group for people living with chronic pain . I was a bit nervous at first because going on even a short trip is difficult for those of us who live with debilitating chronic pain on a daily basis. We worry about being in pain far from the comfort of our recliner, bed or even our own home.  There are worries about taking medications or durable medical equipment on a trip or to a hotel. Then we worry about the airplane ride or the long car trip and the ensuing pain it will inevitably bring. But guess what?  It is always worth the extra effort because our home, bed and recliner will be there when we return.

The U.S. Pain Foundation and their program called “Pain Connection”, hosted this two day workshop in Connecticut, not far from the U.S. Pain Foundation home office.  As with everything else that I’ve ever done with or for them, I was never alone. They walked with me through each and every step of the trip and the workshop. The main thing about any trip is the pre-planning. It makes everything easier if you can call the airlines and arrange for a seat placement that gives you the most amount of comfort.  You can do everything from your bed/recliner and home. All you need is your computer or a telephone. I got an employee of the airport to assist us to the gate, get me and my wheelchair onto the plane ahead of everyone else and all it took was a phone call. They needed the height and weight of my wheelchair and that was all. Everyone was very kind and cooperative. They let me take my wheelchair all the way to the door of the airplane, they took my chair and then assisted me to my seat.  It was much easier to take only “carry on” luggage.  This way we had nothing to “check in”. I brought my gum, headphones, music and smartphone. Everything went smoothly and all of the persons involved were accommodating.  I even spoke to the staff where I had to be “patted down” because of my pacemaker.  I’m not able to go through the scanner or have the wand put around my body because of my implanted medical devices. I told the staff member that I have a nerve disease and she was very cooperative and kind.  She very gingerly patted me down and I was not in any discomfort. You just have to be prepared, verbal and have a kind attitude yourself.

We arrived at our hotel which was a wonderful accommodation and again everything was great! They even had a coffee machine in the lobby with my favorite and special kinds of coffee. We arrived on Friday evening and my husband went to the pool, while I sat at the pool area and rested from the day’s journey. We had a more comfortable bed than mine at home! I slept a whopping 6 hours and the most I ever get is 3 to 4 hours of sleep at home! I’m not sure if it was actually the nice bed or the fact that I was exhausted? Either way I was rested and ready for the day ahead.  On Saturday we went down to a conference room and to my elation, there were several beds ready for takers; along with nice and comfortable tables and chairs.  I had my wheelchair with me, but I quickly snatched up one of the beds and would have gladly shared if anyone had needed it or asked.  We had introductions and proceeded to be trained to work with people who live with chronic pain and their families in a group setting.

Some of the tools that were taught included: relaxation, the “treatment tree” plan, self-compassion, meditation, self-massage and more.  We learned the Psychosocial stages of chronic pain, the grief process and we had a question and answer period with discussions. We watched a couple of videos and did role playing on Sunday. We laughed and cried with each other and truly got to know our peers.  I formed many new friendships during those two days.  These are persons who literally live what my husband/caregiver and I both go through on a daily basis.  The leaders were so wonderful and they too, laughed and cried along with us.  We learned some techniques of Acupuncture and Acupressure and how to lead successful groups.  One part of the weekend that especially touched my heart was when the caregivers did their presentations.  These were the caregivers to the leaders of this training program.  They spoke about how families are affected by chronic pain. Then we had a group discussion. Again on Sunday we learned even more about things such as: guided imagery, breathing techniques, pacing & respecting limits, how to maximize group member engagement and then we learned about flare-up relapse prevention.

At the end of the two days full of enrichment, learning and building friendships; we all received our certification for “group leader training”. We were called up individually and sat on a chair in the middle of the room. It wasn’t intimidating in the least! It was exhilarating to hear the kind words that were said about each person. They went around the room and everyone said something kind and wonderful to the person sitting in the chair.  Maybe it was something they learned from them during the weekend, or it may have been something about their personality that was especially positive? Either way we laughed and cried again, together as a group and individually, personally.   There were polished stones laid out on a table.  Each stone had a word carved or painted on it.  Some of the various words were:  Courage, Hope, Love, Kindness, Healing, patience and so on. Everyone chose a stone that had a special meaning to them and that is when we sat in the “hot seat” and we were given positive feedback from the weekend.

I always felt comfortable to eat, drink or get up and move.  I even wasn’t embarrassed when I fell asleep for a few moments during the comforting music and guided imagery session.  When does a pain patient get to feel so relaxed and comfortable? It is when we are together with others like ourselves and feel comfortable enough to share, laugh and cry together.  I know that many of us were so happy and felt very accommodated and comfortable during this workshop weekend.  Even though I was “wiped out” from the day on Saturday, my husband and I did something that we had never done before! I called an “Uber” to take us out to dinner with some of the staff and other friends who were there.  We had a fun time of chatter and more laughing and much sharing. We went back to the hotel and crashed after that, but it was worth it.

We arrived home but returned with many tools, more knowledge and several new friends. I now feel that I have the tools and am more confident to start and run a support group near my home in Michigan.  I want to give special gratitude to the U.S. Pain foundation and their program called “Pain Connection”.  I also wish to personally say “thank you” to Paul Gileno, Lori Monarca, Gwenn and Malcolm Herman and Cindy and Marty Steinberg. I encourage anyone to be more empowered and try to do things that you think you cannot do. Lastly, I would like to say that whomever wants to know what the U.S. Pain Foundation is all about, read this article again.  You can visit their website and become and Ambassador and have a more fulfilling life.  There is so much that you can do right from your own home. You can even use tools such as Skype and “Google hangouts” to connect with more people. I encourage you to look for a support group near your home and if there is not one available, think about trying to start one yourself. Helping just one person, reaching one person’s heart is worth its weight in gold.

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