Showcasing what many of us live with and deal with on a daily basis:
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/
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!
Pain Awareness Month is fast approaching! September is the month for spreading awareness! This is an American Sign Language video of the song “Roar” , by Katy Perry. Let’s be strong and try to reach out to others living with chronic pain. (This will take you to my YouTube page “ASLSUZYQ”, feel free to Subscribe! Thank you!)
Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!
So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?
I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”. My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”! She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.
I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2. We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do a lot of outings and I just am not able to babysit alone, without my husband there. I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident. My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline. I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!
So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed. My pain Dr. is much better now and the regimen that I’m on is safer. But I’m unable to do the activities that I wish to do with them. If I was the person that I had been, I would be making snow angels with them in the snow. I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together. I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.
Time has changed me and now I am tired and in pain much faster; more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”. It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery. I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all. I want to spend a whole day at the zoo with my granddaughters. I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning. Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference. Things that I wish I could do, I no longer am able to do. I love and look forward to babysitting when my husband is home and he is with me. He is there so that when I start to be too tired and in too much pain, he takes over.
But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident. My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself. I couldn’t even go to the rest room without help. My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad. When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family. I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead. I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.
Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain. Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day. Some think we are lazy, anti-social or just rude. We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients. We must grieve our losses and find new hopes and dreams. This is the price that we pay for living with chronic pain 24/7/365.
I am still “me” underneath the chronic fatigue and pain. I still want to talk with you and hear about your day, family and dreams. In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world. Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else. I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere. Sometimes even sitting on the floor with them. You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends. You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?” If you think like that, I can’t blame you because I once thought those same misinformed thoughts. What you don’t see, is how I get to the floor or how long I am actually down there. You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor. You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm. You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night. Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever. Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day. Often I fight with myself about going to sleep at night. Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours? If I sleep more than 2 or 3 hours, I will awaken and cry. Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry. It’ a routine that we have, you know? My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.
You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights. I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum. But even to him, my pain is not invisible. He knows the grimace of CRPS and the fidgeting of the intensifying pain on an outing. He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”. I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment. I cannot commit to babysitting for the little ones under school age for a week. I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.
Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become. I’m probably not always much fun to hang out with, but I’m still “me” inside. Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt. Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed. I’ve had nasty notes put on my windshield, that would make anyone cry. One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house. I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror. But I was still judged and torn to shreds because of the way I look.
Please know the difference between being able to stand for 20 minutes and being able to stand all day. The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow. Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”. I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends. Though I may “do” these things; I definitely know that I will “pay” for it later. I will rest for days in between and sometimes weeks. But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best. Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.
Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating. I’m doing my best to cope and live my life to the best of my ability. I ask you to bear with me, and accept me as I am.