Scars To Your Beautiful, ASL


Scars To Your Beautiful by Alessia Cara done in ASL (please refer to my YouTube channel at:  www.youtube.com/c/ASLSuzyQ   ….Please Subscribe

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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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.

 

 

I Can’t Stop The Feeling


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!:

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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An ASL Cover, Defying Gravity from “Wicked”


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.