The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

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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What You See Is Not What You Get!


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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.

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No Competition, No Winners!


We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.
Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.

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!

Christmas “Present”


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Hello Luvs,
It’s been a rough few months but now it’s time to get to the “present” and think about the holidays. Even though Christmas day is done it’s still a great time to think about the “true” meaning of the holidays.
We had a wonderful “pre-Christmas” family get-together this year.  It was at our house last weekend before Christmas! It was a wonderful and awesome family time together. I got to have both of my daughters, their husbands and our 3 granddaughters all together under one roof! It was awesome! I got to sit out in my rocking chair, in the living room; while rocking our youngest granddaughter to sleep. She was so quiet, serene and held onto my finger. While rocking her to sleep, it was wonderful listening to the chatter throughout the house. Everyone was happy, talking and laughing.  It’s times like these and occasions like this that are the foundation for building the memories we wish for ourselves and our families.
Now…I know the word “family” can hit a nerve with some people, especially during the Holiday season. But you know that you don’t have to force yourself to sit in a room filled with people who: put you down, denigrate you, degrade you, call you names, hurt you and don’t love you the way they should. YOU are worth more than this! Why people do this and complain about it, I will never understand?  A “family” doesn’t have to be biological. Your family might be a group of your chosen friends.
I’ve come to the conclusion that we put too many expectations on the Christmas season. This is why so many people get more depressed, stressed and the suicide rate is even higher at this time of year.
If you have read any of this blog from the beginning, then you KNOW that I have some reasons to NOT like Christmas time and/or the holiday season. My mother died on December 22, 2002~and my grandmother died on December 30, 1986! I’ve got health issues and most of all chronic intractable pain! I have a progressive, most painful Neurological and autoimmune disease called “RSD/CRPS”. It is also known as “Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome”. Mine is systemic/full body, disseminated and severe. I have Dysautonomia/POTS/NCS and you can just *Google any of those if you wish.(If you have any questions, please message me because I can send you in the right direction if you are suffering from any of these illnesses and I may be able to help with some others too!)
My message to you this holiday season, is to try and NOT go if you don’t HAVE TO GO!~ Don’t spend time with people who don’t deserve you. Concentrate on those that are there for you all of the times, good and bad. If you must be alone, you can turn on music that is calming. You can watch Holiday movies or even drama, adventure films or comedies. If you feel like you want to get out of the house, it is OK to go to the movies by yourself. They are open on Christmas and New Years day.
Spoil yourself and sit with a comfy blanket, read a good book or play with your IPAD, laptop or your smart phone. You may choose to color with markers, crayons or chunky crayons (if your hands hurt badly) in those great new adult type of coloring books.  You may choose to bake,  do crafts or make a scrapbook.
The other thing is this….if you really have someone that you love and you want to be with them but you can’t possibly be there. That’s what SKYPE and /or FACETIME are for! We have friends in Scotland, Australia and Singapore and on Christmas sometimes we turn on the Face time or Skype and we open our pressies from each other IN FRONT OF EACH OTHER! Isn’t that way cool? Technology has become a life saver for many people.
If you are full of bad memories and they are clogging up your mind. Try to think of at least one or two good memories that you have?? I remember our church program one year when they had videotaped children seeing their Military parents come home for Christmas! These kids were in awe with their mouths as open as I’ve never seen before. They were genuinely excited and totally surprised to see their father or mother. They hadn’t thought they’d be seeing them and suddenly that parent walked into their classroom or someplace where they could surprise them well! The looks on their faces were precious and priceless!
I have a GOOD memory,that I want to share with you today. Much of my blog is about some of the bad things that have happened and seems to continue to happen to me throughout my life. But today, I want to share a happy memory and I hope it will help you through your holidays that sometimes can feel “empty” and /or “hopeless” when you are not celebrating as the rest of the population “appears” to be celebrating. Just remember, you have to make your own atmosphere and do what you can to stay “afloat” and not get too sad. There are some suggestions above, that I’ve given you. There are others in books and blogs and websites, you just have to go and look for the help you need.
Here is my happy memory:  When I was about 12 years old, I had made friends with a “grandma” type lady down the street from us. Her name was “Mrs. Usitis” and she invited me to tag along with her to Pennsylvania from Michigan where we lived. My parents allowed me to go because I was going with her and she was taking me to visit with her grand niece who was just one year older than me.
We arrived and I stayed with the young niece and her parents and Mrs. U. stayed with her sister and brother in law. I had a wonderful time and they treated me very well. But I just didn’t know them well, yet..at the time. I had never been away from home or even really never spent the night anywhere before that. I was homesick. I missed my bed and my mom and dad.*( I don’t have a ton of bad memories as a very very young child. I have some and some that I thought were “normal” and I’ve since found out that they are not “normal” and they were downright abusive even then, when I thought my family was “normal” and that I was the “bad one”.)
My mom got my phone calls and I couldn’t sleep or eat and I felt really far away from anything I knew.  She spoke to a cousin of hers in Pennsylvania and they said that the friends who I was staying with could bring me to their home. They thought if I was with “COUSINS”(even though I’d never even met them), that it might help me feel more comfortable. I still felt homesick and was crying and wanted to go home, because I didn’t know them either. They were as nice as they could be to me!
As I was walking around their house one day, eating a Popsicle, I heard the doorbell ring. She opened the door and there standing in the doorway, I saw my “DADDY”!!!(My brothers came too, but I didn’t care so much about them being there, as they drove with dad to keep him company…ha ha…). Back in those days, I felt that my dad and my oldest brother were my “protectors”. At the age of 12, in my head, I thought that I was “bad” and that everything that happened at our house was my fault. At that time, I felt that my mom was the more abusive person in the household. As you grow older and get the “help” or much needed therapy; you find that reality is not what you once thought.
I saw the door open and my dad was standing on the front porch. At the same time, I threw my Popsicle out into the abyss of “wherever?” and I ran as fast as possible and jumped up into my dads arms! OH….oh how I love that memory!  He came to rescue me from nothing whatsoever that was “bad”, but just my being homesick for familiar surroundings. I had led and have really led a very sheltered life especially back then. We didn’t go on vacations, I didn’t go out to dinner with my parents or family; rarely even on special occasions. We pretty much went to school and stayed home. So you can imagine what a “culture shock” it would have been for me at that age and after never being out of my state OF Michigan. I mean…I went on my first airplane ride, with a neighbor lady, not someone I knew REALLY well.(But they were the nicest people…they even fed me when they knew I was hungry because I wasn’t allowed to eat much at home, at all.), and was going to stay maybe 10 days to 2 weeks? I cannot remember all of those details, but the best part of that story was when I threw my Popsicle wherever it went, we’ll never know!! LOL ….I ran and jumped up into my “daddy’s arms”.
Now THAT’s a good memory, huh?
I just wanted to reiterate that you don’t have to “choose” to be down, lonely ,sad etc during the holidays. I try to remember that life goes both ways.  There are people who have it much better than me, and there are also those who have a much more difficult existence than I do.  Sometimes it doesn’t feel like a choice because we can get into a “rut”. When pain is all you know and you feel it day in and day out.  When you hurt no matter if you’re lying down, sitting in a chair or trying to walk a bit. It’s hard to not concentrate on the bad stuff. It’s sometimes difficult to see others who are not in pain doing the things that we want to do. But Life is only 10% what happens to you and 90% is the way you look at it, or your own attitude! Try to relax, breathe and enjoy whatever moments that you can and don’t expect anything and you won’t be let down!
Happy Holiday season to everyone. Please pray for our Soldiers who will not be able to be anywhere near home for the Holidays, with their own families. They are out fighting for our country and our lives, our children and grandchildren’s future and lives too!  Pray for them, for the young men and women who are fighting as I write this blog. My friend, “R”, has a son who is in Afghanistan right now. He left just a month ago or so? He is one that cannot make it home for Christmas. So let’s pray for “R” and her son, “S” and anyone else that you’d like to say a prayer for at this time and during this season of Jesus’ birth.

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Pain, Awareness and Distraction!


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Hello Luvs,

Welcome to Complex Regional Pain Syndrome Awareness Month! It is November, known also as “KNOWvember” and “Nervember” by different pain support persons & groups.It’s that time of the year when chronic pain patients, Ambassadors, Delegates, pain warriors, and many people who live with this illness, try to reach out to friends, family, the rest of the pain community and the non-pain community;  to spread information and gain support of this horribly painful disease.

We post about the fire-like pain and debilitating symptoms of this nerve and neuro-autoimmune illness. I think that some of the others who are our “friends” on Social media get really tired of seeing post after post about pain, illness, and unrelenting symptoms that keep us from living life fully, as most of them get to do. We aren’t trying to take over Facebook or Instagram. We are trying to help others to understand what we are going through. Because nobody knows, unless they truly live with this tremendous amount of daily pain. We see your posts about where you are going and what you’re doing. The trips you take and the places you get to visit. We read about you in the car driving here, there and everywhere; or being at your child’s school events. We scroll down to see the many family members who never even speak to us or even know that we live in daily pain, nor do they ever ask about it or us. We notice the friends who seemed close at one time but after awhile they, too got tired of listening about our pain.

This month is for us! This is a time of teaching, preaching, tweeting and posting. Social media is a great avenue to speak about CRPS and this is a special time of year for those of us who live with this on a daily basis. We actually take this time, not to lament about being in chronic daily pain. We are not complaining or posting of our daily struggles with this “monster”.  NO…we are CELEBRATING ourselves because we can!  We are celebrating the color “ORANGE” as it is the awareness color of our illness. We will color our world orange by the end of the month and especially on November 7th, 2016; which is “Color the World Orange Day” in the USA and some places Internationally. If we are not “celebrating”, then we should be. For one reason or another we are affected by chronic pain. Nobody really knows why any of us were allowed to “get” this painful nerve disease.  It is OK to be sad about it sometimes. Take some time to be sad if you need to and then push that sadness aside and do something to help yourself and others.  Actually, helping others is a great way to feel better about things in your own life.

There are so many things that we can use as distractions from our own chronic pain on a daily basis. The more you sit and do nothing, the more you whither away into the dark abyss of pain, sadness and nothingness. The more you try, the more you do and the more you can be positive; the better life you will have.  Honestly, sometimes I admit that I overdo it and then I “pay” for it later, with much higher pain.  I’m not saying to do what I do. That’s actually going too much the other way at times and honestly, I don’t want that for anyone one either. But there’s a “happy medium” someplace in between laying on the bed and/or couch all day and going, going and doing too much until you are in tears because you’re exhausted.  This month we are a bit more “busy” chatting and posting about CRPS awareness, but then the rest of the year we should try to do some other things to help ourselves to be happier. Of course, I’m not saying STOP advocating, spreading awareness and doing events, fundraisers etc. for CRPS or any other chronic pain illness that you live with. I’m just saying that we need to have a life outside of illness, chronic pain and CRPS.

There are things that we can do to distract ourselves from the gnawing, burning, aching and throbbing of this “thing” called Chronic pain and/or CRPS.  It wants to take over our lives and it will if we allow that to happen. The worst thing that you can do for yourself,is to get in with a group of others living with chronic pain, that are negative, competing to be the sickest and who want to bring you down with them. Instead let’s bring them “UP”, cheer them and ourselves at the same time. Find something that you used to enjoy and modify it to a way that you can start doing it again. For example, I used to be an Interpreter for the Deaf at a major University hospital and several school districts. I lost that after the car accident and I went from Interpreter for the Deaf to Hearing Impaired with 2 hearing aids! I was in performance sign language groups and ASL was a huge part of my life! I thought it was over and gone. Now i make Artistic Sign Language videos on You Tube. I try to find uplifting songs with rallying lyrics and I learn the words first and then just sign the song as emotional as possible while taping it. If I choose the right song, it seems to really resonate with people. It makes them feel emotional in a good way. Sure, I have extra pain when I’m finished, but there are things that I can do to help myself.

Distractions are good if you just don’t overdo it! If you like to be artistic with painting or drawing, you can choose one of those awesome coloring books that they have now for adults too! I thought that I was unable to do that also. My hands hurt as the CRPS and the RA/OA has really gone to my hands and they hurt after just a little while of holding a pen or a pencil.  The remedy for that? Find the kind of crayons, markers or colored pencils that are very “chubby” and better for holding onto when you’re in pain. You could also get that “molding material” that is at the craft stores and put it around your favorite coloring utensils; this way making them as thick or thin as you need. There are also little rubber stoppers that you can buy at the school supplies section, to put around the markers or colored pencils.  If you like to be on the computer, but you have a hard time using your hands, try the “talk and text” option. You may even get a good laugh out of some things that pop up wrongly when you use it. You can that way fix just a few things instead of having to write everything that you wish to write. There are programs for your desktop or laptop, one in particular that I know about, called “Dragon”. It is much better at being precise and it’s not horribly expensive. If it is too much money for you, then ask for that as a gift from several people for Christmas or your Birthday present.

There are so many things that we can do to distract from the chronic nerve pain that we know is there and we feel every day. It will be there waiting for you when you are done, but for a little while it will be a bit more distant in your mind, instead of at the forefront. There are things such as:  knitting, crocheting, painting, drawing, writing, speaking, coloring, “playing” games on the computer, social media, reading and even something like photography.  You don’t have to be a professional photographer, but if you enjoy photos, like I do, there are so many free apps (pic collage, Rhonna Designs etc.) to download and “play” with your pictures. If you need relaxing, there are applications such as “Pacifica” that help you relax to different time allotments and music choices.  There are even photography apps where you get a prompt daily and you get to be creative in taking a picture and posting it to their website (500px, Little Moments). Some other things you can do might be to learn a language or at least a few new words in a language that interests you? You can do as much or as little as you are able to do and try to take a few moments each day to NOT think about your pain, illness and the next Dr. appointment coming up.