This is for my fellow chronic pain warriors (& me)…fighting the ignorance of those who hold the power to help Cpp’s but they’re pushing massage & other complimentary therapies instead! Opioids clearly help some of the pain community. Let our Drs choose what works best for each individual.
We are in pain & we may be “broken”-but we are worthy, we are strong & we are beautiful! Don’t ever give up! No matter how many people try to put you down or try to “break” you even more!!
The final song for this post, is more about how the chronic pain community feels about going into the new year 2020! We don’t know what’s going to happen to us! But we cannot give up fighting for what we need to live some semblance of a life!
6) “Into the Unknown” from Frozen 2 by Idina Mendel/Aurora
I thought you might enjoy a bit of something light, to cheer you. If you’re like me, the “Lion King” was my favorite of all Disney movies. I have here, “The Circle of Life” in American Sign Language-(ASL), from that Movie! I also have below, “Can You Feel The Love Tonight”? In ASL….I hope you enjoy! *Please “Like”& “Subscribe” on my YouTube videos & “click the little bell 🛎. This way you’ll be notified when I post a new ASL cover song video, to my YouTube channel. I’m trying hard to grow my audience. Thank you so much!! Here’s the direct link to watch ” The Circle of Life” In American Sign Language: “Circle of Life” ASL
Just for your information, at the beginning, of “Circle of Life”, I Sign “look over there! Look over there”… then I name several wild animals, such as: Lion, tigers, giraffe, elephant, antelope, hyena etc. Then I show them all coming forward as they did for Simba when they presented him at Pride Rock. Then I sign “we all must protest against the Lion named Scar. We will win & there will be peace again!!” (This is what I’m signing in parts where there is just music). Then I’m signing the song itself, to the best of my abilities.
Secondly, I have also done the song “Can You Feel The Love Tonight?” In ASL. Here’s the direct link to that song done in American Sign Language: “Can you Feel The Love Tonight?” ASL
I hope you enjoy these because they gave me pleasure to make it! Thank you so much for following “Tears of Truth”. Thank you also for Subscribing to my YouTube channel!
Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally “medically possible 100% deaf”. I can hear a few various pitches, frequencies and sounds. With my hearing aids in, I can hear a little bit during a “one on one” conversation. But add in background noise and people who mumble or talk very fast; and then it’s nearly impossible. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces of a puzzle & then trying to “fill in the missing pieces”.
In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 3 years. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, it did feel better after the pressure was gone. But each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 7 or 8 years old. They were surgically placed multiple times and for several years.
Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.
I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural hearing loss in both of my ears L>R (but currently (2019), it’s R>L & it’s a mixed hearing loss). Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.
It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.
Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.
The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.
Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!
I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!
I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.
I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.
Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.
After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became more (*I was mild HoH since elementary school) Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.
I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.
Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!
I am very excited to inform you that I have been nominated for two WEGO Health Awards in the 2018 WEGO Health Awards season. The two areas in which I’ve been nominated are: “Best In Show Blog” (for this Blog “Tears of Truth”) and also for “Best In Show Facebook” for my many facebook groups:
(International CRPS Support group, RASE for CRPS (research,awareness,support and education)
Dysautonomia Support Network
Michigan/Midwest & friends
Chronic Pain Support Group
Deaf/Hard of Hearing and Living with Chronic Pain
People In Pain Unite
ASL Song and ASLSuzyQ (these last two are ASL, or American Sign Language groups).
Also for my Facebook Pages:
RASE for CRPS,
RASE for Invisible Diseases,
Association for Ethical treatment of Pain Patients (AETOPP),
People In Pain Unite,
Gone But Not Forgotten Friends and Family
WEGO Healt is a mission-driven company connecting healthcare with the experience, skills and insights of the patient leaders. They are the worlds largest network of patient leaders, working across virtualy all health conditions and topics. click here to learn more about their Patient Leader Network.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health to empower the patient voice. With 16 award categories, the WEGO Health awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information and support their communities but often without recognition.
I want to thank those who nominated me and thought enough of my advocacy/awareness work to think of me for these awards. It means so much to be nominated because though I don’t do what I do in order to get anything from it; I appreciate being recognized for the work that I do. It means that the work that I do voluntarily to help the several communities that I am involved with, is not going unnoticed. Thank you so much for that.
I feel that I deserve the “Best in Show Blog” award because my blog, ‘Tears of Truth”, has become a large network and a plethora of information for patients who live with various illnesses that especially cause chronic pain. There are many resources and so much information here to address patients with various needs. I feel that I also deserve the “Best in Show Facebook” because I serve several different patient communities who live with chronic pain from various illnesses. I have created 6 chronic pain support groups and 2 ASL groups that support Deaf/Hard of Hearing community (including myself, as I am HoH). I try very hard to work closely with several different non-profits and I do not ask for anything in return. These awards, even just being nominated gives me that feeling of being appreciated.
This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in Octoer, co-hosted by the Society of Participator Medicine at the Connected Health Conference. It is very important to me and I would really love to attentd this event to collaborate with industry leaders. Also, I would truly love to meet all of the people who I’ve been working with and talking with all of these years, since 2010 or so, when I first became a WEGO Patient Leader.
I’m now looking toward YOU, my incredibly supportive network to help endorse me for these two awards. There are two easy ways to endorse me, (*Wordpress does not allow me to put a badge on this blog. Therefore the link is on the column to the upper right side of this blog (on a computer)…or you can easily choose the method below)….that will only take seconds of your time, I promise! (I would love to be endorsed in both categories because they are equally important.
If I have ever supported you, made you laugh, given you inspiration or cheered you on to keep fighting – please consider taking just a few seconds to endorse me for these awards. Thank you in advance, from my heart.
I have been working on a couple of new song covers in American Sign Language. I thought I’d share them with you as I love to do. This on is the song called “The Story of My Life” by a group called, “One Direction” and if you click on the blue link, it will take you directly to that video.The Story of My Life – ASL
The second one that I have done most recently, is called “A Million Dreams”. It is sung by Hugh Jackman & Michele Williams. It’s a very popular and lovely song from the newest hit movie, “The Greatest Showman”! If you click on the name of this song in the blue link, it will take you again, directly to my You Tube Channel. Please remember to Subscribe to my Channel and you can click the 🛎 bell , if you’d like to be notified when I do new songs in ASL. If you don’t want the notifications, you can still Subscribe, but don’t click on the 🛎 bell, that sends the notifications. Also, please “LIKE” the videos if you enjoyed watching them. Please also “LIKE” the videos if you didn’t enjoy watching! 😂
Here’s the second song in ASL: “A Million Dreams”:
Did you know that “Rare Disease Day” is coming soon, on February 28, 2018? Do you know that “rare diseases” aren’t so rare after all? According to the the National Organization for Rare Disorders, there are 7,000 rare diseases and disorders that all together affect 30 million Americans; majority of these are children. In other words, 1 in 10 Americans live with and suffer from rare diseases. This day is an annual celebration to recognize and bring about awareness to the public but also to decision makers. We can each make a difference by either hosting an event, participating in online activities or doing both. Rare Disease day always lands on the very last day in February, the 28th or 29th (if Leap year). Each year we try to increase awareness and knowledge of rare disorders and bring attention to the kind of impact that they have on these people’s lives. Most of these have no cure. Sadly, they largely go unrecognized, under-diagnosed and misdiagnosed. Another fact is that the majority of these diseases, about 95%, have no treatments available and no cures.
Other ways to become involved are to: “Save the date” of 2-28-18, because #NORD will be hosting a #tweetchat (#RDD18Chat) on #RareDiseaseDay at 1:00-2:00pm EST. You can also retweet some facts, such as this one: “There are 1 in 10 Americans that live with a #raredisease. That is 30 Million Americans!” You can download the special Social Media logo’s etc. and post them on your Facebook Cover picture and your profile photo. There’s also an official YouTube video that you can share on your own Social Media accounts, at: https://youtu.be/02zR9r-LOfQ. You can follow them on their USA official links at: Twitter @RareDayUS, Facebook @ Rare Disease Day US and Instagram @RareDiseaseDayUS. The Worldwide official links are here: Facebook @Rare Disease Day and Twitter @RareDiseaseDay. The hashtags that you want to use if you would like to spread awareness via social media are: #RareDiseaseDay, #RareDisease, #RareDiseases, #1in10, #CuresNow and #NORD. There is an entire list of ways to get involved right from your own home, bed or recliner; right here at https://www.rarediseaseday.us/get-involved/social-media/#1474047637908-88935dfd-3a29,
The National Organization for Rare Disorders (NORD) are the sponsors of this day and these events. But the participants in “Rare Disease Day” are the National Institutes of Health (NIH), the U.S. Pain Foundation and other patient organizations, government agencies and companies . We also encourage people to plan Advocacy events near their state capital or house to help with issues that are relevant at the state level. The worldwide theme this year for Rare Disease Day 2018, is much needed research of various rare disorders. When there is active research being done, it brings people who are ill, the hope they need in order to continue living and trying.
I’m really excited to share this with you today! The US Pain Foundation has teamed with Victoria Suan, the producer, creator & Director of her Documentary “Becoming Incurable “. I’d written to you about 6 weeks ago regarding the feature film etc. But today I want to share this online magazine that she’s made to compliment the video compilations and her Documentary!
I am the middle of 3 persons being featured in this online magazine. I’m being featured for the illness of CRPS. This is thrilling and just so very exciting to be a part of this beautiful project to spread awareness of chronic pain and illness.
We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis.Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony.This is the true “Opioid Crisis”. But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan.She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media.She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”,came out in September 2017.In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?”The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode2finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.
Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.”She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.
The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities. She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey. She also wants to do whatever she can so people learn about her feature documentary.
Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis.I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become closeto several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.”She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel.Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?”My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families.Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to.But we are trying to fight because our very lives depend on it.
Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain.Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.
Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”.I think that it taught her and hopefully will teach others about “Invisible Illnesses”.She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”.She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community.If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue.I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide.It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.
Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:
Several years ago I was approached by a YouTube channel called “Invisible No More TV”. They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”. They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more’. I agreed and I’ve been featured on that channel ever since 2012. I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”. The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”. I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.
First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabili.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker. Unfortunatley the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgements.” The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed. One week during the year, the third week of October is the time to share your journey with invisible disabilities. This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”. During this wek, we will be posing many interactive posts on Facebook, Instagram and Twitter. These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share. This is YOUR week to meet new friends, post a video or share stories with others. The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.
This is how this week will play out: On Monday we want you to “share your story”. You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best). Please note that you can post your story throughout the week, but Monday is the starting date for this activity. On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life. You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes. If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at: www.InvisibleDisabilities.org). If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities. IDA is on Instagram at: http://www.Instagram.com/invisibledisabilities, on Twitter at: http://www.twitter.com/InvDisabilities and on Facebook at: www.Facebook.com/InvisibleDisabilities. You can use the tag #InvisibleDisabilitiesWeek.
Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”. They believe that “together we can make a difference in our communities and around the world.”
But now I just want to tell you a little bit about my friend Sherri Connell was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed. At first friends and family were understanding and supportive. She has been able to regain some use of her legs with a lot of work and effort. She still finds it difficult to stand and walk around. But because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding. It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too. She could not care for her own daily needs.
Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness. He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”. Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world. These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.
So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mision to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the Globe”! If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above. Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.
I was reading my news feed today, feeling very much alone in my pain. I have a wonderful husband who does so much and he’s my soul-mate. I have two lovely daughters and 3 granddaughters, ages 1,3 & almost 5!
We had the 2 older ones sleep over last night. So far we have only had the eldest spend the night. That was easy and awesome. I love them all the same! They are my little blessings. But now I’m in so much pain, that I read the following post with tears in my Eyes. I feel like I’m swimming against the current bcz I try so hard to be upbeat and as “good as I can be”! Today’s been really tough and I’m hard on myself ! This writing is beautiful and the writer is not only a long time friend & Facebook friend; but she’s a talented writer. I have reposted her writing here, to share with you her beautiful words. She has a blog called “A Body Of Hope”. I hope you’ll check it out! Without further hesitation, here’s Mary Mattio’s beautiful words:
~If you’re having a bad day…this is for you
You have every right to feel overwhelmed, as though no one understands, maybe you feel afraid, or even hopeless. As far as I know, everyone living with long term illness understands these feelings. I know I do.
Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones needed to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of stress, constantly, over a long period of time that can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like, serotonin, oxytocin, and dopamine are no longer in balance to counter the feelings of uselnessness, loneliness, and hopelessness. What might be a passing thought, thanks to the rigors of chronic illness, becomes a spiraling pit of despair. Pain gets into your very soul, and exhausts every resource.
This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness and pain swallowed me up.
If anyone is reading this and is being swallowed up, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?
I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has blocked.
You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.
You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning things from this battle that no one can ever take from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing. If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and even fragile right now, you aren’t even sure how you’ll go on another day. The pain is pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every treatment, surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies, to separate and protect ourselves. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (PS. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from our loved ones. Who we were can float away, and illness begins to take us over. You are still her! You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perspectives change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness. There is no doctor or article online that can assure you of what tomorrow will hold. As much as your body and mind yell words like “incurable, degenerative, progressive, comorbidities,” instead let HOPE be your weapon of choice.
As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”