The Art Of Learning Compassion


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We are in a group doing role playing above


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

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

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

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

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

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

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

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

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Saying “See You Around”, To An Era Of “HOPE”…American RSDHOPE.ORG


Hello Luvs,

I found out about American RSDHOPE.org closing their doors long before it hit the mainstream community. I had a “gag order” to not discuss it with anyone. I did as any good friend would do, and I kept my mouth shut.  I was shocked and saddened to hear the news though. Today I am still sad to not have that website opened forever for all to get what I got from them. “THEM” meaning the Orsini family, and especially Lynne Orsini, or “Mom O.” to me. Lucky for me, I am “adopted sister” to Keith and “adopted daughter” to Mom O. and I will get the pleasure of having them in my/our life/lives for a very long time, I pray.  I’m not sure the entire RSD/CRPS community knows enough about the real people behind the Organization. Today I will tell you a little bit about the people and the organization. Any details about RSDHOPE.org, that I write about today, have been taken directly from their website at: http://www.rsdhope.org. The writing that I do today about the people, the family, the Orsini’s, is from my heart.

First, I’d like to give you a bit of information about the history of the RSDHOPE organization. Keith was diagnosed with CRPS in April of 1993. This was 8 yrs after a car accident in which he broke his back & tore his rotator cuffs. It went to “full body” CRPS. Keith and his family thought that was the “beginning” of this illness. They had not known that he was suffering with this disease undiagnosed since 1974! When he got the spinal injury is when the disease evolved into “full body” CRPS. But actually it all started in 1974 when he was hit in the face with a baseball!  His cheekbones were crushed, his nose broken. Keith wanted to stay in the game but his dad wanted him to go to the ER. Dad O. “won” and at the hospital the re-set his nose, fixed his cheekbones.That was the start of the pain, memory issues and all of these things associated with CRPS. But back then they had no name for it. His parents were very diligent in taking him to many hospitals and Dr’s to find out what was going on with him. They never did get an answer but they got “more of the same” that we all still get today! Such as: “your son is on drugs. Your son Wants more drugs. he is seeking attention because he is the 4th child in the family.  He is acting out. He is making it all up.  The pain is all in his head. He is exaggerating his pain.”  A few of the Dr.s’  even tried to say it was a couple of other diseases which they then researched & dismissed. They  never got an answer back then. He graduated High school and then College. He continued playing sports all the way through High School. He suffered all of those years with the: migraines, pain above the neck, face, eyes, ears, top of head etc.  He had all of the symptoms with Allodynia, sensitivity to sound, touch, vibration, temperature etc. Also, an unusual thing happened to Keith, in that he lost some vision in his left eye. But up until the spinal injury, Keith describes his years with the original CRPS as a “walk in the park”.

It was only in 1993, after the car accident injuries and all kinds of horrible pain, when they finally gave him the actual diagnosis of “RSD”. This is what he suffered with all along since he was 14 yrs. old! The first Dr. told him that the “RSD would burn itself out after a year or so”. Hmmm….he’d had it for 19 yars already, so he was not believing her assessment. Then 3 months later he went to a pain management Dr. who told him to “buy not rent a wheelchair”. (**I remember being told that same thing when I first got my motorized scooter and then my wheelchair, because my shoulders had been injured so badly, I could not maneuver the scooter very well or for very long.My husband and I had tears in our eyes, and I was actually crying when we walked out of the Dr’s office that day. The day that the PMR Dr. gave me a “Permanent” HC placard for the car.)

In 1993, Keith moved back in with his parents. He needed their help and they were there for him every step of the way. He had hoped that after getting a name for his illness and pain, he’d find a wealth of information about it. Instead “he found a huge hole where information should have been”, he said.  Keith got out of his wheelchair after about 7 years. He started using it only when absolutely necessary after that.

As you know, the pain of RSD/CRPS is always there lurking around. Sometimes its a 6/7 on the pain scale and sometimes its a 9/10. Just as many of us know, the CRPS is most always a precursor to many other diseases, ANS failure/problems, EDS,  autoimmune illnesses, FMS and more. It does weaken our immune systems and this is the culprit.Keith said that same sentence that many of us say, and that is “I wouldn’t wish this pain on my worst enemy”.

In 2008, Keith moved to Florida for treatment and to get out of the cold weather. It made him worse, staying through those cold Maine Winters. First, I want to tell you that Keith is stubborn and I feel like we are kindred spirits. He volunteers at a school with children and reads to them etc. I taught sign language and still try to go in and do that when I am able. We all need to do something because if we do nothing then we hurt more. If we do something then we hurt more. Why not do something to take your mind off of your pain just even for a little while? If you can make someone smile or make a difference in someone’s life, then if you cannot work outside the home, you are still doing a service in life. I volunteer as a Chemo angel, card angel, special assignment angel and prayer angel for the Chemo-angels program. All it takes is being able to write a short letter, say a few prayers  and maybe send a little bookmark or a magnet or something fun to someone else who is suffering. But with chemo angels you never speak of your own problems or pain. For that little bit of time, you dedicate your thoughts to someone elses pain.

Do you know that people who suffer from CRPS are in pain 24/7/365? We are in pain all of the time. So why not do something rather than do nothing, if the pain is going to be there anyways? Keith did that and I do that and I know many people with this pain, who try to use whatever they can for the good instead of wallowing in the bad only. That’s not to say that we won’t have bad days, weeks or even months. But whenever we can, we must try to do something that helps us concentrate on someone else and making their day better or giving someone a smile.  I like Keiths’ own words when he says that “Just getting out of bed in the morning is a decision that may increase your pain. It is what you decide to do after that that determines your destiny.”

Just like Keith, I have tried many different treatments and pain medications. The Fentanyl patch works for him and it is also working for me. Funny thing is that his insurance company forced him to try a generic patch for a month and it threw him into a horrible flare. I had that same incident happen to me. I’d been using the same generic patch for a long  time and they suddenly just changed brands on me!  Let me tell you….it is different and its true that not all generic are the same. Just as not all generic are the same as the original medications. Anyone with CRPS knows that once you are under treated and in a flare; it takes a long time to get it back under control. It takes a whole month before you are allowed to get a different medication too. Now days with the way things have changed and are ever changing; the medication situation is getting worse.

People see me and they think “I look great”. Even the Dr.’s say to me “Oh wow, you look happy and great, I’m glad you are doing so well”. Why do they assume that just because I’m trying to be a pleasant person who doesn’t constantly complain, that I have nothing to complain about? I try to do things. I go places and I get ice cream with my husband and grandchildren. We are planning a trip right now to go to a pain conference in Maine for a few days. Am I a little nervous about going? Yes! Do I know that the driving and the days out doing more than usual are going to make my pain worse? YES! But am I going to do it anyways? YOU BET I AM!! I’m a strong and unusually tenacious person. Keith says that he is the same and he makes sure that he does something at least 4 out of 6 days, with his wonderful and beautiful wife, Anjanette. She also suffers with pain from MS. They have each other and that is a great thing to have. I have my Craig, my soul mate, my love, my best friend and now my caregiver too.  We all need someone and if not a spouse, then a parent, sibling or best friend. I just “look” fine in my photos because I’m trying so hard. I get up and I put on make up every day or 6 out of 7 days. I get dressed and I try to do at least one thing each day. No matter how I feel, I try to do something or else I would just hibernate and feel sorry for myself.

I got involved with RSDHOPE back in 2007 or 2008 actually. I called from the website and spoke with Keith’s sister Karen (who has since passed away, sadly). She and Mom O. spoke with me and gave me some information and then set me up with a “Mentor”. It was up to me to call her and whenever I needed her, I called her. She wasn’t my best friend but she was my “mentor”. Someone who was volunteering her time to help me when  I had fear, questions or unrelenting pain that led to feelings of sadness. She always helped me and I will never forget her.  Later, after I didn’t need a Mentor anymore, we kind of slipped away from each other. But I know if I picked up that phone, she would be there again for me. Just as now I’ve been a Mentor for many years now. I’ve been a Mentor for not only RSDHOPE but also for RSDSA . I’m now an Ambassador for the Chronic Pain Foundation.

The reason that I’m writing this article is because earlier this past month, we had to say “goodbye” to RSDHOPE.ORG. The website itself will be open for about 5 years with updated information. The brochures were updated in 2016, so they’re good for at least those 5 years too.  Keith and Anjanette took Mom O. into their home. They wanted to be a family together and help each other out. Mom O. couldn’t do the call volume and website upkeep by herself or just the 3 of them together. They just couldn’t keep up the pace that is needed to care for 400,000 people and so many who call on a daily basis. People call needing Mentors, support and a suicide hotline sometimes. We all retire and start a new phase of our lives.

Now is the time for RSDHOPE.ORG aka “American RSDHOPE” to be dwindling down, to retire and to “go on vacation” so to speak. It’s time to “pass the torch” to the new generations. Sadly, that means that there’s a big hole in my heart.  A place that I supported for years and years is not there for me anymore. It’s just a website with information. The people behind that website full of wonderful information are still here but they aren’t there.  The place that I called “home” for my RSD/CRPS is no more. I thank God that I am good friends and consider myself “family” to the Orsini’s. I thank God that they see me in that same “family” sort of way. I can call Keith up and say “Hey bro” and he will say “so what’s up, Sis?”…I still have my brother, Keith. But all of the people who will not have RSDHOPE.org as a backbone to lean on, like I have for many years;will be missing out on something very special. The Orsini family is special to me and they are always and forever in my heart. I’m happy to have been a part of that family for so long. I’m really happy that I’ve gotten to know them and especially Mom O., who is so kind, loving and giving. When you’re afraid, who do you want to talk to? Your mom, right? Or someone who is very close to being like the mother you’d always hoped to have. That is Lynne Orsini, or my “Mom O.”. She is full of heart, hope and kindness. She always had time for me and my questions and my quandries. I got to know the whole family except for Dad O., and I wish I had known the man who started all of this. But I do know the man who is taking the time to be finished with something that was great in its time and will always be remembered as such. He and Anjanette put this and other things aside now, to be with Mom O….they want to be together as a family for as long as they can all be together. I am happy to have been a part of that, a part of RSDHOPE.org for at least 8 years. Now it’s time for me to move on and keep the Orsini’s in my life in a different way. We chat online or on the phone. We can still be brother and sister, mom and daughter and sis-in laws. We just won’t be doing it from the window of the RSDHOPE.org website. Now we will be doing it as just people, friends and as a family.

I am also happy to be a part of the family of RSDSA and it’s Executive Director, Jim Broatch. I’m excited and joyful to be a part of the US Pain Foundation, as an Ambassador. I don’t care if I have a “title” or a “name”, I just want to be a part of a “family” that does good for people. I want to do good for people. I want to lessen their fears as mine were lessened. I want to do fundraisers by making something or doing something to get the money to help us find a cure for this horrible and painful illness/disease. I want to help children with this illness as does RSDSA. Already I feel like I’ve been “adopted” by these organizations. I have special friends that are also my “family”. I help and do as much as I’m capable of doing with full body/systemic CRPS, among many other painful illnesses.

I get up each morning and I try. First I lay in bed and put in my eye drops because my eyes are so terribly dry, that I cannot even see in the morning or at night either. My husband, who is also the love of my life, my best friend and my caregiver brings me my oral medications. I lay in bed and moan and sometimes I cry as I try to remove the splints on my hands/arms, which are very very swollen and painful. I sometimes cry as I remove the socks that I have to wear to bed. It’s due to the blood from the lesions on my feet that has stuck to the socks I sit up first and my husband is there as I lean on him and try to muster up the strength and suck in the pain for another day. Another day full of smiles and doing what I’m “supposed” to do, to keep this life going in some kind of positive direction. If not for keeping mostly positive, then what would life be for me or for my husband, my family or my new grandbabies. Don’t get me wrong, believe me, I do get negative. Just ask my husband! But I always pick myself up by the bootstraps and keep on holding on. What is the alternative?

Just as we say Goodbye to RSDHOPE.org or American RSDHOPE. Just as Keith and the Orsini family move onto another phase of their lives. As they are now finding out what they’d like to do together and where they want to go in life.  I am also changing and growing. I’m finding out who I am in this illness, as a person with “severe systemic RSD/CRPS dissminated”.  My family is changing, growing. My husband is gearing up for retirement in a couple of years. I am finding a place or a couple of organizations to set up my roots and grow as a person, again. It’s time to say “goodbye” and when one door closes, another one always opens up.

I’ve always felt at home with RSDSA, as I’ve written parts of my blog for them and I’ve done fundraisers for and with them. I’ve gotten advice from Jim B. when I was nervous about something or when I had a “gut feeling”. He steered me right, but made me make up my own mind about it. I’m getting to know Samantha and others who make up the family of RSDSA. I’m getting to know my US Pain Foundation “family” as well. As we sit here…..as I am writing this, I have a suitcase packed.  I’ll be taking my first trip since I got the diagnosis of “severe systemic CRPS disseminated” 4 years ago, in March 2013. Before that time, I had lower extremity CRPS . If that wasn’t bad enough to go along with Degenerative Disc Disease, Connective tissue disease (Polyneuropathy in Collagen Vascular disease = EDS vascular), Autonomic Neuropathy, Dysautonomia/POTS, Arnold Chiari Malformation I and the migraines that go with it, Rheumatoid and Osteo- Arthritis, Prinzmetal Angina/Coronary spasms, Atrial fibrillation, Sick Sinus Syndrome, Multiple herniated/bulging discs at C4,5,6 and L4,5,S-1 with Radiculopathy. I have lesions which are Eczema secondary to the CRPS long term. I have a pacemaker with a cardio messenger box doing EKG’s 24/7/365 next to my bed and sending them via the airwaves, nightly to my heart Dr. in Toledo at UTMC. So much more that I’m getting just too tired to write. So much because people have their own things and after a few diagnosis’, they really don’t want to hear anymore. Can’t say that I blame them. Can’t say that I blame you at all. We all have our own “situations” to deal with. Our own “set of cards” that we’ve been dealt. I’m going to go “play cards” this week with the US Pain Foundation and part of some of my old and new “family”. I’m getting in a car with my husband and driving 2 days (*lucky for me my cousin is staying at my house with my kitty, Luna) to go to a leadership conference. I will get to meet and gently hug many of the people I’ve come to know and love over these years following my car accident and the pain/injuries that have gone with it.I get to have an adventure and meet new people that I will grow to know and love. I will learn from the US Pain Foundation. I will take with me what I learn and use it to help others from now on. How about you?

Let’s all follow in the footsteps of the Orsini family and try to keep people informed and get up each day and do one thing to help yourself and /or someone else to get through their day and yours. We aren’t saying “goodbye” ,we are saying “img_7788 or will I get to go here?AAEAAQAAAAAAAAW0AAAAJDc1NjcxM2I1LTk0NmYtNGVlYi04MDNiLTExMmNiYTM2OTVlZg

There’s still so much out there left for us to see and to do, we cannot let it go because of pain and fatigue. I just can’t let it go. I’ll muster up every bit of strength I have left and with the help of whomever will help me, I will do it. I will….. I can because I’ve already been through so much and I have made it through. I will make it through again..

People With Pain Matter


People With Pain Matter! This Video is about my Chronic pain, CRPS Story & other Info. As well! A plea re: Opioids and correct information regarding subject also! #peoplewithpainmatter #painedlivesmatter #KeephopealiveforCRPS ….Opioids don’t kill people!~ People Kill themselves when they take Opioids with alchohol and illicit drugs like Heroin. Pain Patients control their medications and not the other way around as in drug addicts. Statistics prove that most overdose deaths are not reported correctly to the public. Chronic pain patients are “lumped together” with drug addicts and we are NOT!