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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June Is PTSD Awareness Month


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With all of the different awareness ribbons and events, fundraisers and 5k walks for different illnesses out there; not many want to talk about PTSD. During the month of June each year, time is set aside to remember the illness called “Post Traumatic Stress Disorder”.  It seems to be an awareness month that we don’t talk much about but it is a very real illness.  PTSD is a disorder which can occur when there is a failure to recover after experiencing or witnessing a shocking, scary, dangerous and/or terryifying event or events. According to the Mayo Clinic, there are more that 3 million cases each year in the United States.

This illness can last months or years, with certain words, ideas and even smells that trigger the memories of the trauma. Along with the memories that return, there are intense emotional and physical feelings and reactions in the body.  Some of the symptoms of PTSD might include things like depressed mood, anxiety, nightmares, flashbacks, heightened “fight or flight” response and avoidance of situations that bring back the trauma.  There is treatment for this illness which may include Psychotherapy, behavioral therapy and medication.

There is a natural “fight or flight” response in our bodies that is supposed to warn us when there is danger near or that something terrifying might happen.  It is normal to feel afraid during and after a traumatic event or situation occurs. This fear is something that brings about a chemical change in the body to protect us from whatever may be happening that is fearful.  It is the body’s way to help defend against or avoid danger or dangerous situations.  Most people recover quickly and naturally from the initial symptoms of a fearful experience.  There are those who continue to experience problems and feel stressed or frightened even when they aren’t in danger any longer.  These people are sometimes diagnosed with PTSD or Post Traumatic Stress Disorder.

Not everyone who experiences PTSD had been through something very dangerous, but instead may have experienced the loss of someone very close to them. The symptoms usually begin within 3 months of the traumatic event, but often can occur immediately.  These symptoms must last more than  one month  and be severe enough to interfere with working and personal relationships, to be considered true PTSD.  Some people can and will recover within 6 months, some have chronic symptoms.  A Doctor who has experience with mental illness, such as a PHD Psychologist, Psychotherapist or Psychiatrist is needed to diagnose PTSD properly.

One of the most common things that people experience with having PTSD is called “flashbacks”.  This happens when you relive the traumatic experience inside of your mind or body over and over.  There are physical symptoms like a fast or racing heart beat, sweating, bad dreams and invasive fearful thoughts.  People with PTSD also try to avoid smells, places and situations that remind them of the experience(s). An example might be a bad car accident; afterwards a person with PTSD might not want to drive a car or even be a passenger.  When you have this illness you are or can be easily startled, you may feel “on edge” and have insomnia or have trouble sleeping. When someone experiences these unpleasant feelings after a traumatic event for just a short time afterwards, it is called ASD, or Acute Stress Disorder.  When they last longer and affect a persons ability to function, it is then called PTSD.

If you would like to participate in the June PTSD awareness month events on Social media, you can visit http://www.ptsd.va.gov/about/ptsd-awareness/promo material awareness.asp.  You can also follow the National Center for PTSD on Facebook and Twitter.  Those links can be found at the bottom of the website at http://www.ptsd.va.gov.  No matter how much you think you know about PTSD, there is always more to learn and ongoing research, new treatments etc.  Please take action, help those who suffer and live with this illness by visiting:  www.ptsd.va.gov/public/wher0to-get-help.asp.  Spread awareness as often as you can, but especially during the month of June each year.  This is the month which is set aside for people to share information and make people more aware of this debilitating condition that I, and many others live with. Take the mystery out of this condition, learn about it, find out who is affected an how you can help.

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Walking Through The Day With a Pain Warrior


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This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

 

 

 

 

From Mini Van to Wheelchair In 10 Seconds!


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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.

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The Pain That Never Ends


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I married to get out of the house, when I was just 20 years old. That lasted 10 weeks and it was so terrible that I won’t even discuss that time period. Luckily that marriage was annulled and I moved away to another city to work at a school for the Deaf. I lived between my 2 aunts homes and got to work with Deaf children. I loved that job and I was also Interpreting for the Deaf at a great church. I got to participate in 2 drama groups that did sign language or “ASL” to songs and choreographed dance. I had a wonderful time during the year that I lived in Arizona. It was 1982-1983 and I celebrated my 21st birthday there and was part of a church youth group with wonderful friends.
I arrived home from Arizona and later met someone. We dated, got married and we were married for 8 years. We had 2 daughters, a dog and a beautiful home. I won’t belabor the story of how the Marriage ended because people can be hurt still today, from that “story”. I will say that I obtained help from a shelter and the Women’s Resource center. I moved out of our home a few months later when my older daughter finished kindergarten. Their father moved 1800 miles away and rarely saw them. I took care of them all by myself. I was the only person that was always there for them! Even if I had to leave my job in the middle of the day to be there for them and return to work afterwards; I would do that. So much has happened in my life. Most people would think that it’s horrific, but I soldiered on. I was almost completely alone but the three of us had each other. We were very lucky to have received some help from some very good people, churches and counselors.
When my oldest daughter was in 4th grade, I went on field trips and I took every chance possible to help out at the girls’ elementary school. I started a “Sign Language club” at their school, for a group of 4th and 5th graders. I taught 35 children some songs in Sign Language and did that for about 4 or 5 years. I love children and had so much fun interacting with them. I would teach fun songs in Sign Language and at the the end of the year we would have a show for the parents and the rest of the school. The “Silent Impressions Sign Language Club” was after school each Friday. I had that day off from my job and used it for volunteering in the classroom or at school and for teaching the Sign Language club. Towards the end of that year, my daughters’ teacher and I started to discuss meeting up for a coffee. He was a single dad and I was a single mom but we decided not to date until the school year was finished. Once we started dating we found that we were truly “soul-mates” and a little over a year later; we were married in the Wedding Chapel on Valentines day 1997.
One Saturday afternoon during the Summer of 2002, my husband and I were meandering & sipping lemonade at an outdoor Craft fair; while deciding where to go for dinner. The girls were with their friends and so we headed towards our town to a restaurant. As we were driving through a green light, a man ran through the red light and “t-boned” our mini Van with his SUV. I only remember a terrible burning smell after screaming “OH MY GOD”! The “lights went out” and I have vague memories of being in an ambulance and at a hospital and crying due to horrible pain. Luckily my husband was not hurt and a Police officer took him home to get our other car and our kids. I have no memory of the time without him being there with me.
I could not stand or barely move. My husband says that people were leaving the halls because my screams of pain were too hard for them to hear. My case was given to a trauma Dr. and I was admitted to the hospital. After 5 days my husband called my Neurologist (who I knew because of a Long thoracic nerve injury in 1999); and signed me out against medical advice. The weren’t doing anything for me. My husband told them that I was not acting like myself. I wet the bed and could not even stand to go to the bathroom. Instead of diagnosing me correctly with the TBI, that I later was finally diagnosed with; they sent up a Psych consult. They told us that I was “acting that way due to being abused”. My husband stayed with me the whole time and it was still a horrible experience. I left the hospital and that’s when questions started being answered. My then, G.P. and Neurologist helped get me the testing that was needed. I was found to have 2 torn rotator cuffs and multiple herniated/bulging lumbar and cervical discs. I had a torn Meniscus, sprained ankles and wrist. Also, I was diagnosed with Chiari I malformation, which I was born with but until the MVA, it was “sleeping”. Well, it awakened and I started having the worst migraines in the back of my neck and head. I could not hold my head by myself. My husband had to put me in a wheelchair with a yardstick behind my back and head with a pillow holding up my head. I couldn’t dress or undress myself or even go to the restroom alone. I couldn’t cut my own food or sleep in my bed. The insurance company sent a hospital bed for me to use or I slept in our recliner. I was in the most pain I’d ever known, outside of childbirth. The Physical Medicine & Rehab Dr. sent me for Neuro-Psych testing and I was found to have a TBI or “Traumatic Brain Injury”. The report said that my “short term memory was in the toilet”!! I went to a TBI Rehabilitation Center, daily from 9:00 am – 3:00 pm for 3 years. I had several different areas of nerve damage. It was discovered that I have a convergence insufficiency in my eyes and Moderate hearing loss in my ears. I needed Prisms on my glasses and 2 hearing aids. As I continued to faint nobody would help me or even listen. My husband knew something else was wrong and so did I. But to get Dr’s to listen when things are complicated and when so many things wrong; is very difficult. I saw a Neuro-Cardiologist because the TBI center sent me to him finally because of the fainting. I was diagnosed with Dysautonomia and POTS. I had Coronary spasms and a permanent pacemaker was placed. I ended up having 8 surgeries! I had visited so many shoulder Dr’s but none of them would listen to my issue regarding a “nerve zing” that went down my left arm from my left shoulder. One Dr. said to me “What part of “I can’t fix it, don’t you understand? Is it your brain injury?” OMG!! He was horrible and while I was walking out with my walker; the girls in his office looked horrified by what their boss had just said to me. I had several awful experiences with physicians, until one finally listened to me. It only takes ONE Dr. Folks! One to listen to you and help you. I ended up finding out that during that entire year that I was visiting shoulder Doctors; my biceps tendon had ruptured during the accident and it had grown onto the bone incorrectly. I had to have open shoulder surgery! They had to un-attach my Biceps tendon and reattach it with 2 screws. It was very painful.
I went through so much! Later, I had my 7th surgery, which was in 2007 on my right foot. It was the start of another nightmare! I was told that it would be a 30 minute surgery. I had been put on Coumadin, a blood thinner; due to having a heart attack in 2005. Following that Heart attack, I was diagnosed with Atrial fibrillation. After that, in 2006, I suffered a CVA or stroke. The surgeon didn’t want to take me off of the Coumadin and so she put a blood pressure cuff around my ankle to stop blood flow to the right foot. The surgeon came out and told my husband after 90 minutes, that “once inside, the foot was much more gnarly” than she originally had thought. It took much longer than expected and there was no blood going into my foot during that time. Five days after my surgery, I was hobbling along in our kitchen and suddenly a big golfball sized lump popped out of my ankle and was purple, black and blue instantly! It felt like knives sticking in my ankle and I was writhing in pain. My husband took me to the E. R. but nobody wanted to help me. I sat there crying in so much pain while they “were waiting for another ambulance to come for the girl in the next bed who was “stable”. I was crushed again that no one would help me. We paged the Dr. who did the surgery and left the E. R.! She told us to meet her at the surgery center the next morning. I had to make it through the night like that! It was so much pain! She said that the “synovial joint sac had burst over my ankle joint “ and that is why it was so painful! She gave me Fentanyl Lollipops and told me to take them until the swelling could go down. That would take time & then the pain would lessen, slowly. I went for my 6 week check up and told her that the pain was worse than before I started. She told me that I had “a little RSD” and gave me some “Lyrica” I waited and things got worse and the Lyrica was horrible with nasty side effects. It did nothing but make things worse for me. I went to another Orthopedic Dr. and got a 2nd opinion. He walked by the room and said that my foot looked like “classic RSD” and he sent me directly to a pain clinic.
Prior to that MVA, I had only known the pain of abuse, and non physical types of pain. Childbirth was painful because I had 2 C-sections. The second time was a C-section after 43 hours of labor! But it was worth it because I got to have a beautiful baby both times! Also, there was an end to the pain of labor! There is no end to my current pain. The CRPS or “RSD” has gone systemic or full body since my 2nd pacemaker placement in 2013. Everything that could go wrong, has gone wrong. Mostly, because Dr.’s would not listen or had a preconceived notion of me and who I am. But I am strong! I am a survivor and it’s time to listen to me! I’m fighting for the pain patients and I won’t give up.img_3995

If The Appt. Is Not Going Your Way, Be On Your Way!


Are your medical conditions/illnesses very complicated? Do you have more than the average person’s share of visit’s to medical specialists’? If you are anything like me, with a variety of high pain illnesses, then the answer to these questions is a definite “YES”.  Most of us who are “complicated cases” have had experiences that most healthy people wouldn’t be able to fathom. It feels as though I’ve been treated with less respect, since I’ve become a chronic pain patient. I know this because I was once a healthy person. I was listened to and given treatments or tests to find answers.  I went to a specialist several years ago, who should have known what “RSD/CRPS” is all about. A Dr. who should have known what the letters represent.  He took my husband and I into his office and sat us down in small chairs in front of his huge desk.  He barely glanced at the packet of information that I’d given to him. I bring it to each new Dr. appointment. The idea is to make it easier for them and for me. I don’t have to continuously re-write answers on every new patient questionnaire. The physician can flip through very clear descriptions of my medical history. This Dr. looked down at the packet of information for just a couple of short seconds. He looked up at me and said “So what is R.D.S.”?  Really…. What is “R.D.S.”?  I looked at my husband, gave him the signal and we got up and left.  But not before I explained to that Dr. that “It is not called R.D.S., it is R.S.D. and also known as Reflex Sympathetic Dystrophy and/or Complex Regional Pain Syndrome”.

I went to another specialist who told me that even though I have legitimate high pain illnesses, including systemic CRPS, my “pain meds are way out of his league”, and “there is no reason for me to do P.T. or O.T.” Then he told me if I “wanted a Cortisone injection I could have one”, but otherwise nothing he could do because “everyone over 50 has a torn meniscus”.  It was so strange because the first few times I’d seen this Dr., it was right after my car accident. He did the appropriate tests and then he did surgery on my 2 torn meniscus’. But some time had passed and now I was a “chronic pain patient” with several illnesses. I felt like a Pariah, as if now I was not to be taken seriously. Next, he entered the room with a large needle. I knew what it was because I’d already had Cortisone injections to my knees s/p my MVA in 2002. I started to cry.  I’d done this 7 times before, but never with a diagnosis of “severe full body/systemic CRPS”. I’d always been stoic and therefore felt respected by this particular specialist. He told me “I’ll come back when you’re not hysterical anymore”.  I told him that injections can make CRPS worse. In between tears I reminded him that it hurt me very much to even blow air on or touch my knee.  I just couldn’t imagine that kind of injection with this kind of pain.  He left the room and came back a few minutes later.  I was afraid that he wouldn’t help me again if I didn’t comply.  I should have listened to my heart. But fear of a person in a position of “power” over me (or so I felt at the time), allowed me to let him hurt me even more. He had the nurse spray the Lidocaine skin numbing spray, continuously, as he put the Cortisone injection into my already burning, aching, freezing, sensitive left knee. In the end, my pain worsened and the swelling was more than when I started.

Another series of unfortunate events was when I visited several specialists for my shoulder injuries after the car accident. I kept getting told that I had a “torn Rotator cuff” time after time. But I knew that something else had to be wrong because they were saying that I had a torn Rotator cuff in both shoulders. But my left arm had a nerve pain that went down my inner arm whenever I moved a certain way. I went through this pain for over a year and through at least 5 physicians of the same specialty. I didn’t give up, not even after one of the Dr’s said to me “What part of -“I can’t fix it, don’t you understand? Is it your Brain injury?” I quickly left in tears that day (*because I do have a TBI from the MVA)  and never looked back. I finally found a Dr. who listened to me and I was finally diagnosed with a ruptured biceps tendon, that required surgery with 2 screws to repair it. Someone finally listened to me and my inner feelings were correct.

Several similar  incidents have happened to me and I know they’ve happened to many of you. I’d like to share one more experience; the most dangerous one for me. There was a time when I was passing out again and again. I was vomiting from all of the different medications they’d been giving me to “help” with the various pains s/p the MVA. I was in a “Six months and out” rehabilitation center. Meaning whether you get better or not, you are “kicked out after 6 months”. It was a terrible program and it is a story for another day. But what they did to me was unforgivable. Nobody was listening and no one was helping me. They forced me to swim in a pool & get dressed when I could barely button or unbutton anything for myself. They tried to blame it all on the fact that “I’d been abused”. They truly thought I was “faking” or manufacturing the fainting spells! This was the one and only time I’ve ever been accused of anything like that. They strapped onto an exercise bike while I was suffering from 2 torn rotator cuffs & 2 torn meniscus’. I tried to yell out to two physical therapists who were talking to each other.  I yelled to them that I felt faint and thought I might pass out. I did faint while still strapped onto that bike. They had to call an ambulance and as I lay there waiting, there was fear in their faces. A shakiness in their voices as they told me to “lie very still”. My heart rate was only 24 bpm and my blood pressure was only 70/40. I was later told that I could have had a stroke with my stats this low. I was hospitalized and that’s when I received my first permanent dual chamber pacemaker. I was watched all night and then diagnosed with “Sick Sinus Syndrome”, a bradycardia/tachycardia arrythmia in my heart. I was also diagnosed with Prinzmetal Angina or Cornonary spasms, Long QT syndrome, Atrial fibrillation and more. After my recovery, I found a great specialist in Autonomic system failure, POTS, pacemakers and EPS. I’ve been treated by him ever since 2003. He is the best Dr. I’ve ever known and I feel very lucky to have him.

But do you see how we are not listened to or believed at times? We are sometimes not taken seriously because we are “too complicated” or just because we have many illnesses.  Some Dr’s don’t want to get involved in more than earaches and sore throats. Things they can “fix”. They can’t “fix” us and so some don’t want us as patients. Many pain patients have been through bad experiences such as car accidents etc. We deserve to be respected the same as anyone else, if not, just a bit more!

If you go to a Dr. and:

  • he/she stands by the door and cannot wait for you to finish speaking, before telling you “Ok, we’ll see you in 6 months, nice to meet you”.
  • If you go to a physician who acts like you have “too many things wrong with you”.
  • If you can tell that they think you are just too complicated and they don’t want to be involved.
  • If you bring your records and all of your information and they go against your other physicians diagnosis’
  • If you get put down, made fun of or called names
  • If the Physician doesn’t have a clue about your illness(es), for ex: “RDS or RSD”
  • If They want to ignore your other Dr’s treatments and start all over again
  • If they act like you’re just too much trouble and they don’t want to be bothered

LEAVE….DO NOT PASS GO! Don’t feel that you have to finish your appointment! Many times I give my husband our secret “nod” and we just leave before the appointment is over. There’s no reason that you need to stay anyplace that you do not feel comfortable. You don’t owe any Physician your time or money, if they aren’t treating you respectfully. Remember that you’re paying for their services.  If you aren’t being listened to or taken seriously, please be on your way. It doesn’t matter how many Dr’s you visit until you find the one that finally “clicks”. Don’t give up; there will be one that finally “gets it” and understands your issues. There will be that one to finally help you

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Support Groups,Chronic Pain, And Why Kindness Matters


 

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When we are in pain, it sometimes can be hard to see another persons pain as well.  I have founded and am Administrator for several Support groups online. Some are for chronic illnesses & pain. While others are for fun and socializing. I’ve noticed that my group for people who love Cats,”The Scratching Post”; is very different than my other groups that are in support of people living with different kinds of pain. The reason that they are so different is because people who are just there to hang out and talk about the silliness of Cats  are usually thinking more positive thoughts and they’re in their happy place. Those of us who struggle with pain, may feel a various number of emotions. We bring those emotions into the group setting. Luckily, in the support groups that I run; I have not had any trouble with drama, in-fighting or bullying whatsoever.  I tend to think that it is because I have been the sole administrator and I take care of anything and everything Before it happens. I always check the “new requests” very thoroughly. I try to keep my groups safe from harm or any kind of researchers that want to “study” us/them. I have had people pretend to be someone who is in pain and they request to join my support group online. A long while back, I had a few interns from various countries, who wished to “study” the persons with CRPS or Invisible illnesses, so they tried to join one of my support groups. I have not ever asked their reasons because they don’t even get that far. I just don’t let them join my groups.

A few of the the ways that I keep my groups safe are by doing a few simple tasks before allowing someone to  join. I look for “signs” on their pages and I ask them several questions via private message. If their page is bare, without even a cover photo or profile picture; I don’t even pursue their request to join. If it just looks a bit “private” but they’ve been on Facebook for several years, then I ask them the questions that I will post below for you. If they have a few friends in my support group(s), or if they are referred by someone in the group; I usually just welcome them to the group and don’t check much more. I will ask the person who referred them or the people they have as their “friends”, if they know them well or if they are just an acquaintance?  Here are a few of the questions that I ask a prospective new member in one of my online support groups:

  • First I will make a statement something like : “Hello, my name is Suzanne and I’m the founder/admin. for the group that you have asked to join (then I name the group)”.  Then I’ll say, “Please don’t feel singled out, because I ask all prospective members the same questions. I like to just get to know you a little bit to make sure that you are in the right group for what you want/need.”
  • Secondly, I will ask them How did you find this group? What were you searching for?(Because my groups are mostly private, which means they can be seen in name only but the posts are private)….this also helps both of us make sure that they’re in the right place.
  • Then I might ask, What makes you want to join this type of group? Do you live with __ or __? (*Chronic illness, invisible illnesses and/or RSD/CRPS), or are you a Caregiver?
  • Next, I will say “When were you diagnosed? Where do you live?”
  • Then I will check everything out and usually allow them to join
  • If they don’t or won’t answer any of the questions, I don’t allow them into my groups. There are many other groups out there and I just want my members to feel safe.
  • If their page has zero information, zero photos and nothing that you can see whatsoever, that is a bad sign and I just usually “ignore” that request to join.

Some ideas for Administrators and moderators of groups already ongoing are:

  • Check the group regularly and just look over the new posts as they come in. Respond as soon as possible.
  • Look for abusive language &/or aggressive behaviors
  • Watch for a person that may be “picked on” or who has the anger of the group “dumped” on them. Act accordingly to figure out and fix the problem.
  • If you have spoken to someone a couple of times and they are rude to you or other members, it’s time to take them out of your group for the members’ sake
  • Ask for help, as I just recently started doing. I just couldn’t be everywhere and do it all. I asked for volunteers, for people who wanted to do some of the things that I cannot keep up with. Such as checking out all of the new members. Watching for any abusive, nasty or negative language or posts; and then telling me about them. Then I can decide whether to delete the post or talk to the person. Either way I will speak to the writer of those kinds of posts; it’s just a matter of before or after I delete it. My new moderators have the choice if it is a very abusive post to just delete it and tell me who and what, later.
  • Make sure that if you do ask for help, you choose people that you relate well with. Also persons who you have known for quite a while and you trust them and their judgement.

Unfortunately, many of us with Chronic pain issues and illness,  don’t always have the most supportive families or friends. These types of people also try to show up in groups to find out information for the “family”. That is another article in and of itself about Malignant Narcissist’s or abusers. If you have a supportive family, that is half the battle; it’s wonderful for you and that alone can help with your healing.

Whether you are a founder/administrator, a moderator or a member of an online support group.  Try to think first before you write, or at least before  you hit the “send” button. Remember that in Facebook support groups, you have the chance to go back and delete what you have written. Just in case you were terribly upset (we all can feel that way sometimes) and you want to get rid of your post before another person’s feelings get hurt or worse. Never carry private or specific information from one group to another. If in doubt, always ask the administrator(s). If you want to re-post an article or something similar, then go to the original Website  where that article was posted and share straight from there. This way you aren’t taking a post from one group and sharing with others. Usually  it is impossible to “share” between private groups anyways; but just in case.

We all continue to learn and grow in our lives each day. I’ve made mistakes before and I try to make amends or change whatever I can, so that I don’t repeat the error of my ways. I do my best to think first before I react or say something to another person, whether they are a friend or foe. Regardless if they are online in a group or out in the world in some kind of group setting. We are all humans and everyone feels hurt when someone is downright rude or is treating us badly. I want to add that if you are going to comment either way about something that someone has said, written or done; always be sure that you know all of the facts first. Don’t just read one line of something that someone has written, and then make a rude or cutting remark.  Don’t try to guess what someone means when they write a sentence or two in a group post online.  Sometimes the short or hastily written words cannot depict the true feelings, ideas or thoughts of a group member.  Keep in mind that some people are better at expressing themselves with spoken words and others are better at writing. Try to not get bothered by the small things, and think about what the “tone” of the words feel like to you; even if you might’ve said it differently.

When all is said and done, remember that we all inhabit this internet world together. We need to be as kind, loving and gentle as possible. There are always times when we say or do the wrong things. What we do afterwards, or the next time; is what matters most. Be kind and remember that the person you are upset with may have a whole mountain of issues, illnesses or problems that you don’t even know about.  That doesn’t give them the right to abuse or hurt you or others in any way. But just get away & remove yourself from the situation whenever possible. It never hurts to explain yourself, if  you feel that someone has gotten it wrong or judged you wrongly.

Lastly, please remember in the support groups for chronic pain, illness, grief, abuse survivors etc….these people are hurting a bit more than the average amount.  Try to be understanding and be a good listener, especially in a support group.  Give hurting members; those who are in much pain either physically or emotionally, a little leeway. Remember to be gentle and kind.  If you felt hurt by the actions or words of another member in your support group, step back for a moment and think. If you forget and then  realize that you retaliated against someone in a group, because you felt angry or hurt; try to make amends. Try to put yourself in someone Else’s situation, if you know it. If not, then try to just be thoughtful of others feelings. Treat them how you would like to be treated.  Remember that Kindness matters!