Scars To Your Beautiful by Alessia Cara done in ASL (please refer to my YouTube channel at: www.youtube.com/c/ASLSuzyQ ….Please Subscribe
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.
An ASL Cover of this popular song sung by Justin Timberlake. It’s from the Dresmworks movie called “Trolls”. First I have posted the formal and regular ASL version of this song (American Sign Language). The 2nd version is a funky & fun version! Please check out my YouTube channel with over 45 (as of 6-20-17)ASL covers of popular, holiday , Broadway & Christian songs! I’d like to please ASK you to SUBSCRIBE TO MY ASLSUZYQ YOUTUBE PAGE!! I need subscribers in order to get my page name! Thank you so much!
P.S.: I also have another Youtube page @ Youtube.com/Suzydukettes and it’s an Advocacy channel with videos for spreading the news on behalf of the chronic pain patients.
And here’s the funky one!:
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.
Please enjoy watching the ASL Cover song below, of “Defying Gravity” from the Broadway show “Wicked” and sung here by Lea Michele. This is from my YOUTUBE page called “ASLSuzyQ”, please subscribe to my YOUTube Page after watching. Thank you so much! Enjoy! Feel free to tell me in the comments, what songs you would like to see done in ASL.