We are in a group doing role playing above
Beds were brought in for people who needed to lay down awhile. That’s me with the blue blanket on the bed!! Isn’t that so thoughtful, accommodating and awesome? The US Pain Foundation did this for us!
I wanted to write something about my experiences this past weekend when my husband and I went to Connecticut. I was invited to go to a weekend seminar to learn how to be a “support group leader” and how to host an “in-person” support group for people living with chronic pain . I was a bit nervous at first because going on even a short trip is difficult for those of us who live with debilitating chronic pain on a daily basis. We worry about being in pain far from the comfort of our recliner, bed or even our own home. There are worries about taking medications or durable medical equipment on a trip or to a hotel. Then we worry about the airplane ride or the long car trip and the ensuing pain it will inevitably bring. But guess what? It is always worth the extra effort because our home, bed and recliner will be there when we return.
The U.S. Pain Foundation and their program called “Pain Connection”, hosted this two day workshop in Connecticut, not far from the U.S. Pain Foundation home office. As with everything else that I’ve ever done with or for them, I was never alone. They walked with me through each and every step of the trip and the workshop. The main thing about any trip is the pre-planning. It makes everything easier if you can call the airlines and arrange for a seat placement that gives you the most amount of comfort. You can do everything from your bed/recliner and home. All you need is your computer or a telephone. I got an employee of the airport to assist us to the gate, get me and my wheelchair onto the plane ahead of everyone else and all it took was a phone call. They needed the height and weight of my wheelchair and that was all. Everyone was very kind and cooperative. They let me take my wheelchair all the way to the door of the airplane, they took my chair and then assisted me to my seat. It was much easier to take only “carry on” luggage. This way we had nothing to “check in”. I brought my gum, headphones, music and smartphone. Everything went smoothly and all of the persons involved were accommodating. I even spoke to the staff where I had to be “patted down” because of my pacemaker. I’m not able to go through the scanner or have the wand put around my body because of my implanted medical devices. I told the staff member that I have a nerve disease and she was very cooperative and kind. She very gingerly patted me down and I was not in any discomfort. You just have to be prepared, verbal and have a kind attitude yourself.
We arrived at our hotel which was a wonderful accommodation and again everything was great! They even had a coffee machine in the lobby with my favorite and special kinds of coffee. We arrived on Friday evening and my husband went to the pool, while I sat at the pool area and rested from the day’s journey. We had a more comfortable bed than mine at home! I slept a whopping 6 hours and the most I ever get is 3 to 4 hours of sleep at home! I’m not sure if it was actually the nice bed or the fact that I was exhausted? Either way I was rested and ready for the day ahead. On Saturday we went down to a conference room and to my elation, there were several beds ready for takers; along with nice and comfortable tables and chairs. I had my wheelchair with me, but I quickly snatched up one of the beds and would have gladly shared if anyone had needed it or asked. We had introductions and proceeded to be trained to work with people who live with chronic pain and their families in a group setting.
Some of the tools that were taught included: relaxation, the “treatment tree” plan, self-compassion, meditation, self-massage and more. We learned the Psychosocial stages of chronic pain, the grief process and we had a question and answer period with discussions. We watched a couple of videos and did role playing on Sunday. We laughed and cried with each other and truly got to know our peers. I formed many new friendships during those two days. These are persons who literally live what my husband/caregiver and I both go through on a daily basis. The leaders were so wonderful and they too, laughed and cried along with us. We learned some techniques of Acupuncture and Acupressure and how to lead successful groups. One part of the weekend that especially touched my heart was when the caregivers did their presentations. These were the caregivers to the leaders of this training program. They spoke about how families are affected by chronic pain. Then we had a group discussion. Again on Sunday we learned even more about things such as: guided imagery, breathing techniques, pacing & respecting limits, how to maximize group member engagement and then we learned about flare-up relapse prevention.
At the end of the two days full of enrichment, learning and building friendships; we all received our certification for “group leader training”. We were called up individually and sat on a chair in the middle of the room. It wasn’t intimidating in the least! It was exhilarating to hear the kind words that were said about each person. They went around the room and everyone said something kind and wonderful to the person sitting in the chair. Maybe it was something they learned from them during the weekend, or it may have been something about their personality that was especially positive? Either way we laughed and cried again, together as a group and individually, personally. There were polished stones laid out on a table. Each stone had a word carved or painted on it. Some of the various words were: Courage, Hope, Love, Kindness, Healing, patience and so on. Everyone chose a stone that had a special meaning to them and that is when we sat in the “hot seat” and we were given positive feedback from the weekend.
I always felt comfortable to eat, drink or get up and move. I even wasn’t embarrassed when I fell asleep for a few moments during the comforting music and guided imagery session. When does a pain patient get to feel so relaxed and comfortable? It is when we are together with others like ourselves and feel comfortable enough to share, laugh and cry together. I know that many of us were so happy and felt very accommodated and comfortable during this workshop weekend. Even though I was “wiped out” from the day on Saturday, my husband and I did something that we had never done before! I called an “Uber” to take us out to dinner with some of the staff and other friends who were there. We had a fun time of chatter and more laughing and much sharing. We went back to the hotel and crashed after that, but it was worth it.
We arrived home but returned with many tools, more knowledge and several new friends. I now feel that I have the tools and am more confident to start and run a support group near my home in Michigan. I want to give special gratitude to the U.S. Pain foundation and their program called “Pain Connection”. I also wish to personally say “thank you” to Paul Gileno, Lori Monarca, Gwenn and Malcolm Herman and Cindy and Marty Steinberg. I encourage anyone to be more empowered and try to do things that you think you cannot do. Lastly, I would like to say that whomever wants to know what the U.S. Pain Foundation is all about, read this article again. You can visit their website and become and Ambassador and have a more fulfilling life. There is so much that you can do right from your own home. You can even use tools such as Skype and “Google hangouts” to connect with more people. I encourage you to look for a support group near your home and if there is not one available, think about trying to start one yourself. Helping just one person, reaching one person’s heart is worth its weight in gold.
Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved first attempt and that doesn’t happen often. When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years. We don’t want her to have to tell her story to even one more person.” I was approved and then things got medically worse from there. In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light. Within seconds, our lives changed forever!
I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams. I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation. Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries. I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction. I endured many hours of MRI’s and other more invasive tests. After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker. As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.
In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners. Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it! After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic. I had first gone to the pain clinic for: cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more. The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.
Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were: “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more. Nothing has improved very much, in those areas since that time. As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now. I cannot remember movies and can see the same movie several times. If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told. I feel very bad when I meet new friends, especially online “friends”. When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report! I have recently been diagnosed with Gastroparesis and you can’t see it! Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”. It is what’s happening on the inside, that is important.
The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”. Since then, it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting. I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision, extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.
I went to University and graduated with honors in Sign Language Studies/Interpreting. I worked for a local school district’s Deaf/HoH program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hard of Hearing person with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data. Now I depend on my smart phone, using: Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.
I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!! Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.
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!
The above website is an article written by a facial nerve pain patient named Carol Levy, a columnist. She called her article : A Pained Life: Painaholism *(June 12, 2013).
You may read the article about what Carol Levy calls “Painaholism”, if you should choose to do so. I’ve put the website at the top of this blog post. After reading that article, *(usually I moderate all posts prior to them going up in my support group for pain, website. I feel responsible for 650 people in my support group, or more now, to make sure that they are not “bullied” or fed incorrect information also to make sure that each feels cared about as much as the others. I do care and that’s why I was not very happy when I read the above article regarding something called “Painaholism” and comparing Alchoholism with Chronic Intractable pain/nerve pain etc . I allowed it up on my group page because I thought it was good for discussions, and it most certainly was/is. Many people spoke up against it and have the same feelings that I have about calling Our RSD/CRPS chronic burning nerve pain, and others with their own forms of different kinds of nerve pain syndromes; “Painaholics”. This person compared us to “Alchoholics several times in her article. I have written my opinion about this article and I wanted to post it here for you to give it some thought. It start just below:
*************************************************************************************************** This is my “opinion” about this article and Carol’s views. First of all, everyone is entitled to their views! I believe that this idea that chronic pain can be compared to “alcoholism” is wrong and bad for those of us in chronic intractable pain day in and day out for so many years! Now I do know both sides of this …in a way..No, Ive never been an alcoholic… But my grandfathers were both alcoholics and I suffered from anorexia for most of my life until my car accident and the pain it caused, forced me to stop caring what my weight is and take Meds that would make me ill if I don’t eat. so I had to start eating and just plain STOP being afraid of food just because my parents : weighed me, punished me for my weight and poisoned me and starved me! THAT (EATING DISORDERS) can be kinda sorta “compared” more to alcoholism. Only because you start defining who you are by your weight! It’s still very different from alcoholism because you NEED FOOD TO SURVIVE & you don’t need Alcohol to live! But there are a few similarities in that it is and isn’t sort of a “choice”. When you are in the depths of an E.D.; you don’t feel like there’s a choice ;but in all reality you CAN choose to change your mind set and make yourself nourish your body!
Ok ..so what I’m trying to say is that I do not believe that pain is a choice! No matter what someone writes in their own personal opinion! My opinion is that a person who thinks they can change it by pretending it doesn’t exist , is living a lie! Maybe their pain isn’t it hasn’t been as bad as mine and many other people’s!!??? I’m not going to name off my list of all my diagnosis’ …but maybe someone with one pain and not RSD/CRPS PLUS nerve pain diseases, Polyneuropathies /Radiculopathies etc.. CAN fix themselves by changing the way they think and look at their pain! I think that’s 100% GREAT if you can get your pain to that level and you can “pretend not to be disabled anymore because you aren’t writing that down anymore!”
For me and many others in Chronic , burning, nerve pain PLUS…I CAN fix my attitude -yes!!! I think we can all do that! I can choose to talk about my pain constantly, ruin my life and everyone’s
who’s around me!! Also by doing that, I could possibly be “controlling” everyone around me with my pain… If I never do anything else, speak of anything else and never have any kind of other life except being “married” to my pain! I am doing exactly that…”controlling everyone with my pain”! But I don’t do that! I find things to make my brain continue to work and some things that make me feel good about myself, even with all of my health and pain issues. I run 2 support groups, I’m a mentor for “newbies” with RSD/CRPS through RSDHOPE.org…Im a “chemo-angel” and I have a CAUSE called “R.A.S.E. for Invisible Diseases”!!
I do my best to only complain when I feel that I must and I try hard not to let it stop me from spending some good, quality time with my husband and my daughter!! Many of my friends who have pain similar to mine do a lot of things in their lives still! They don’t “choose ” pain, none of have done this, that I’m aware of?? My pain is “disabling” and that’s not a “bad word” or “Taboo”;
some word that I need to fear ??!!! It took some of my “Abilities” away… From me… My abilities to do so many of the physical things I could once …at one time …that I could do easily with excitement and fun!! Now I’m “unable” …also “disabled” from doing some or most of those things! Now, I have gotten special appliances including: motorized scooter, walker, wheelchair, leg braces (AFO’s),cane /loftstrand crutches, hearing aids, glasses etc!!! I got these things to enable me to do some things sometimes and still not a whole lot on other days!!!
So you see, I’m not standing up in front of my pain group and saying aloud ” my name is Suzanne and I’m a “pain-aholic”!!! Because that would mean that I am choosing to be in pain over having a fulfilling life! But you see, I have my mind (except for the MTBI & short term memory issues from Cerebullar damage”!) and I don’t hurt other people because I did something to make myself be “out of my mind” for most of the hours in my days!! An Alcoholic can & usually does hurt physically, mentally and emotionally, the people closest to them!! The only thing the two things have in common is that they are truly both “diseases”!!! But they are as different as Anorexia and Cancer! We in pain, speaking for myself and the few people who I know truly very well, who are in similar amounts of pain as I am….we don’t choose to hurt anyone or ourselves, we hate writing “disabled” on any forms etc… We hate saying “I will try to go shopping or on a trip with you…but I’ll let you know on that day, if I’m able to go or not or for how long I’ll be able to walk on any given day! Alcoholics are not anything like us “spoonies” (if you haven’t read the “spoon theory by Christine Miserandino.; then you need to do so!)… We can do only what we can do on any given day and each day can be very different! Lastly from experience, I know how abusive many Alcoholics can be!!! I’ve only really ever met one or two abusers who were in pain and their pain wasn’t the reason for them being abusive…their mental illness was the reason or they were just plain “ABUSIVE” for no reason!
I’m not a “Painaholic” I DON’T GET A” HIGH” OR PLEASURE from my own pain OR FROM INFLICTING PAIN ON THOSE WHOM I LOVE!!
**This is an informational website to find out more about RSD/CRPS….Lastly, I have and moderate three (3) support groups for chronic pain persons: the first and longest standing support group is on Facebook groups at: https://www.facebook.com/groups/Invisible.diseases/
…it is a closed private group and your membership must be approved first. This way we keep out any bullying, spamming and other negatives, if at all possible….. the second group is on Google+ and it is called “Be Aware & Care” , it is just getting started and we only have 67 people so far in this open and public group. Lastly, I initiated and set up a CAUSE on Facebook and it’s called “R.A.S.E. for Invisible Diseases” (http://www.causes.com/invisiblediseases) ..and we send out notices several times per year and many times in November for RSD /CRPS month of awareness. WE send out notices to raise awareness of this horribly painful Neurological disease. We do it to raise awareness, donations, education and support! Any donations by-pass people, by pass me, they go directly to RSDHOPE.ORG …The website has a very large amount of information for RSD/CRPS. You can locate that website above right near the RSD/CRPS awareness ribbon picture…thank you for your time!