I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?
How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!
“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!
This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!
You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!
What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!
Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.
Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!
Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?
Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!
I was so touched by this email that I received from my friend and colleague, Dr. Mark Ibsen, M.D.. I wanted to re-post this here in my blog, because I thought you would enjoy reading it.
**This is a guest blog post written by Dr Mark Ibsen MD***(He’s referring to this article: https://www.npr.org/2017/11/25/565729334/gaslighting-how-a-flicker-of-self-doubt-warps-our-response-to-sexual-harassment)
When I read this,
I could see how pain patients are often gaslighted
Out of their story, their reality
By the domination structure.
Not always male ( think Jayne Ballentyne)
Very similar to the harms associated with
Sexual harassment/abuse that is so currently in our national focus.
Whether male or female
Pain makes us doubt our own reality.
This is what makes it such a terrorist.
Can we piggy back into the abuse conversation?
Can we make the case that those with arachnoiditis, for example
Were harmed by needle jockeys
Dealt with dismissively ( no one will believe you)
Cowed into submission by being threatened with loss of their medication?
Cancer patients who survive,
Yet can’t get pain relief for their neuropathy,
And get the message:they should be grateful to be alive…
Wounded warriors who return from Iraq or Afghanistan with
Severe injuries and ptsd
Who must reinvent their entire persona?
Maybe there’s something useful in being with this issue in a new way…
Or any kind of harassment.
I’ve been gaslighting myself for years in response to the attack on my practice by
The Montana BOME,
Along with the ptsd from hearings where my
Personality was attacked
My integrity impugned
My mental health repeatedly called into question.
Of course the financial disaster of
Loss of my business
Has been great,
But the greatest impact has been on my confidence
Open hearted empathy.
Overcoming these self doubts,
While a daily regimen
Has taught me to be more authentic
Has shown me that being Raw upgrades my intuition and healing skill set,
Making a wider range of emotional states available to me, as well as the opportunity to transform these states.
So- yes Pain IS an F/N terrorist.
While I have yet to develop gratitude for
Mike Fanning and the Board
Dea agents Addis and Tuss
Pharmacists who refuse to follow the CSA and refuse to fill my Rx
Others who ripped me off when I was reeling,
Have learned the validity of Winston Churchill’s statement from WWI:
” nothing so enlivens the soul as to be shot at without result”
It took me 4 days of the Thanksgiving holiday to get to this place. Thanks to friends
Mark Ibsen MD
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. Episode 2 finished 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 close to 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.
When we are in pain, it sometimes can be hard to see another persons pain as well. I have founded and am Administrator for several Support groups online. Some are for chronic illnesses & pain. While others are for fun and socializing. I’ve noticed that my group for people who love Cats,”The Scratching Post”; is very different than my other groups that are in support of people living with different kinds of pain. The reason that they are so different is because people who are just there to hang out and talk about the silliness of Cats are usually thinking more positive thoughts and they’re in their happy place. Those of us who struggle with pain, may feel a various number of emotions. We bring those emotions into the group setting. Luckily, in the support groups that I run; I have not had any trouble with drama, in-fighting or bullying whatsoever. I tend to think that it is because I have been the sole administrator and I take care of anything and everything Before it happens. I always check the “new requests” very thoroughly. I try to keep my groups safe from harm or any kind of researchers that want to “study” us/them. I have had people pretend to be someone who is in pain and they request to join my support group online. A long while back, I had a few interns from various countries, who wished to “study” the persons with CRPS or Invisible illnesses, so they tried to join one of my support groups. I have not ever asked their reasons because they don’t even get that far. I just don’t let them join my groups.
A few of the the ways that I keep my groups safe are by doing a few simple tasks before allowing someone to join. I look for “signs” on their pages and I ask them several questions via private message. If their page is bare, without even a cover photo or profile picture; I don’t even pursue their request to join. If it just looks a bit “private” but they’ve been on Facebook for several years, then I ask them the questions that I will post below for you. If they have a few friends in my support group(s), or if they are referred by someone in the group; I usually just welcome them to the group and don’t check much more. I will ask the person who referred them or the people they have as their “friends”, if they know them well or if they are just an acquaintance? Here are a few of the questions that I ask a prospective new member in one of my online support groups:
- First I will make a statement something like : “Hello, my name is Suzanne and I’m the founder/admin. for the group that you have asked to join (then I name the group)”. Then I’ll say, “Please don’t feel singled out, because I ask all prospective members the same questions. I like to just get to know you a little bit to make sure that you are in the right group for what you want/need.”
- Secondly, I will ask them How did you find this group? What were you searching for?(Because my groups are mostly private, which means they can be seen in name only but the posts are private)….this also helps both of us make sure that they’re in the right place.
- Then I might ask, What makes you want to join this type of group? Do you live with __ or __? (*Chronic illness, invisible illnesses and/or RSD/CRPS), or are you a Caregiver?
- Next, I will say “When were you diagnosed? Where do you live?”
- Then I will check everything out and usually allow them to join
- If they don’t or won’t answer any of the questions, I don’t allow them into my groups. There are many other groups out there and I just want my members to feel safe.
- If their page has zero information, zero photos and nothing that you can see whatsoever, that is a bad sign and I just usually “ignore” that request to join.
Some ideas for Administrators and moderators of groups already ongoing are:
- Check the group regularly and just look over the new posts as they come in. Respond as soon as possible.
- Look for abusive language &/or aggressive behaviors
- Watch for a person that may be “picked on” or who has the anger of the group “dumped” on them. Act accordingly to figure out and fix the problem.
- If you have spoken to someone a couple of times and they are rude to you or other members, it’s time to take them out of your group for the members’ sake
- Ask for help, as I just recently started doing. I just couldn’t be everywhere and do it all. I asked for volunteers, for people who wanted to do some of the things that I cannot keep up with. Such as checking out all of the new members. Watching for any abusive, nasty or negative language or posts; and then telling me about them. Then I can decide whether to delete the post or talk to the person. Either way I will speak to the writer of those kinds of posts; it’s just a matter of before or after I delete it. My new moderators have the choice if it is a very abusive post to just delete it and tell me who and what, later.
- Make sure that if you do ask for help, you choose people that you relate well with. Also persons who you have known for quite a while and you trust them and their judgement.
Unfortunately, many of us with Chronic pain issues and illness, don’t always have the most supportive families or friends. These types of people also try to show up in groups to find out information for the “family”. That is another article in and of itself about Malignant Narcissist’s or abusers. If you have a supportive family, that is half the battle; it’s wonderful for you and that alone can help with your healing.
Whether you are a founder/administrator, a moderator or a member of an online support group. Try to think first before you write, or at least before you hit the “send” button. Remember that in Facebook support groups, you have the chance to go back and delete what you have written. Just in case you were terribly upset (we all can feel that way sometimes) and you want to get rid of your post before another person’s feelings get hurt or worse. Never carry private or specific information from one group to another. If in doubt, always ask the administrator(s). If you want to re-post an article or something similar, then go to the original Website where that article was posted and share straight from there. This way you aren’t taking a post from one group and sharing with others. Usually it is impossible to “share” between private groups anyways; but just in case.
We all continue to learn and grow in our lives each day. I’ve made mistakes before and I try to make amends or change whatever I can, so that I don’t repeat the error of my ways. I do my best to think first before I react or say something to another person, whether they are a friend or foe. Regardless if they are online in a group or out in the world in some kind of group setting. We are all humans and everyone feels hurt when someone is downright rude or is treating us badly. I want to add that if you are going to comment either way about something that someone has said, written or done; always be sure that you know all of the facts first. Don’t just read one line of something that someone has written, and then make a rude or cutting remark. Don’t try to guess what someone means when they write a sentence or two in a group post online. Sometimes the short or hastily written words cannot depict the true feelings, ideas or thoughts of a group member. Keep in mind that some people are better at expressing themselves with spoken words and others are better at writing. Try to not get bothered by the small things, and think about what the “tone” of the words feel like to you; even if you might’ve said it differently.
When all is said and done, remember that we all inhabit this internet world together. We need to be as kind, loving and gentle as possible. There are always times when we say or do the wrong things. What we do afterwards, or the next time; is what matters most. Be kind and remember that the person you are upset with may have a whole mountain of issues, illnesses or problems that you don’t even know about. That doesn’t give them the right to abuse or hurt you or others in any way. But just get away & remove yourself from the situation whenever possible. It never hurts to explain yourself, if you feel that someone has gotten it wrong or judged you wrongly.
Lastly, please remember in the support groups for chronic pain, illness, grief, abuse survivors etc….these people are hurting a bit more than the average amount. Try to be understanding and be a good listener, especially in a support group. Give hurting members; those who are in much pain either physically or emotionally, a little leeway. Remember to be gentle and kind. If you felt hurt by the actions or words of another member in your support group, step back for a moment and think. If you forget and then realize that you retaliated against someone in a group, because you felt angry or hurt; try to make amends. Try to put yourself in someone Else’s situation, if you know it. If not, then try to just be thoughtful of others feelings. Treat them how you would like to be treated. Remember that Kindness matters!
OK..yes, I did “borrow” my title from the new Katy Perry song “Roar”. I had just done a performance of that song in ASL (American Sign Language), a few weeks ago, in a You Tube Video (at “Suzydukettes” channel on You Tube),and it just gave me a new sense of power and strength. When I was practicing and then finally performing that song in Sign Language, for “November-RSD/CRPS Awareness month”; I originally did it as a way to let others see that we are in pain but we CAN still have the power to change our own perspectives. I got such a rush out of the words, the feeling and the emotions that ASL brings to those words, that I didn’t realize that I’d overdone it once more. I had used up too many “*spoons” (*explained later).
I was down for not only the next week or so, but I’m still ill a month later. I ended up with a sore throat, fever, cough, pain *more. I got on antibiotics, then fell one night. I just hit the floor powerfully and don’t know how I got there, except that before the left side of my head hit the floor, it first hit the cupboard and then the countertop and then the floor! I screamed out for my husband, who was sleeping, but I forgot that my laryngitis made it almost impossible for him to hear me. Finally, he came downstairs and held me with and ice pack on my head for an hour, while I whimpered, cried, and felt sorry for myself. I went to bed about an hour later, though I don’t recommend that. I think you should always go to the hospital when you hit your head THAT hard and you are on blood thinners for Atrial fibrillation. Also, since this was about my 3rd time or maybe 4th time of hurting my head this badly, or worse….I really should’ve gone to E.R. (*Just so you know a little history, in 2000, I hit my head on a metal pole as I bent down to grab something and I felt “ice” going down my face and it was numb for 4 months with some residual permanent damage whereas my eyes don’t have a complete blink, nor do they shut all the way. I need special gel in them at night. Also you can see it mostly in photos, if you look closely, my left eye wanders and the one side of my face goes down still a bit, when I’m tired. I had a CT scan and got prednisone for brain swelling!!! In 2002, I was in a bad car accident. A man ran a red light and I had multiple injuries, tons of pain, nerve injuries and too many to tell you here, now. But I suffered an MTBI or Mild Traumatic Brain injury and had to have 3 years of TBI rehab from 9-3pm daily M-F! I’ve had several falls in between and OH…I forgot…I also had bad whiplash in another car accident in AZ in 1983, when a drunk lady hit me from behind. She was driving 45 mph, whiIe I was stopped at a traffic light. Whiplash is not good for the brain injuries either! I was born with Arnold Chiari I Malformation. My brain’s “tonsils” or hindabrain, swell into my spinal cord, which causes great pain as well. Lastly, without too many details, I will tell you that I grew up in a family where I was hurt by those who are supposed to love me the most. I was “punched” repeatedly in my temples, my head etc.. It happened many many times from as far back as I can remember and it didn’t end until I moved out at age 20. My mother used her knuckles instead of her fists; because “it hurts more”, she said. I won’t elaborate on the abuse right here, right now; as this is not about that part of my life. This is just a little introduction that hopefully can help others see that those of us who suffer from CRPS and other “invisible diseases/disabilities” have and do go through many of the same horrors and/or wonderful parts of life as everybody else go through. We just have this horrible, burning, hot “fire”-like pain that we suffer from and endure unending. There are many other components to CRPS, than “just” the pain. But that is the worst part of being afflicted with it. I want to say right here and right now, that just because sometimes you cannot see a persons disability, disease and/or pain; does not mean that it doesn’t exist! Most of us actually do try to hide it because we are usually judged harshly and scrutinized by others who are well, or others with their own health issues. I’ll let you look up the medical diagnosis, terms, symptoms and outcomes of people with this painful disease, because I want to use this time in a better way. You can visit : http://www.rsdhope.org or http://www.rsds.org to find out more regarding the questions and answers for this debilitating illness.
When I had my 7th surgery, following that car accident in 2002; it was April of 2007. I was having my right foot operated on and the Dr. had told us it would take her about 30 minutes. My husband was getting worried after an hour and half, when she finally came out to speak to him. Her exact words were “Well, it was a lot more gnarly in there than the X-rays showed”. After 5 days, I was hobbling around my home, and suddenly felt what I would describe as “1,000 sharp razor blades cutting my foot/ankle”. It swelled up instantly, about the size of a nectarine!! I had a nectarine sized “knot” sticking out of my now “black” ankle! I screamed as it hurt more than ever before! We went to the ER, and they practically laughed at me and told me that “it was swollen from the surgery”!! WHAT??? I tried to explain that it just “happened” and it obviously had something to do with the surgery, but this was not “normal surgery swelling” as they tried to force me to believe. We contacted the surgeon, luckily she is kind and gave us her cell phone # …she told us to meet her at the surgery center in the morning before her surgeries. I had to live with that excruciating pain over night!! She said that my “synovial joint sack broke”. She explained that it was all of the joint fluids popping out into the area, making the swelling and bruising colors. There was absolutely nothing she could do except help the pain a bit, and send me home to rest up. I went for my 6 week check up and found out after 6 weeks of “fire, burning, hot, swelling, sweating, nerve pain” in my ankle, that I had ” a bit of RSD/CRPS”. A “bit” of it? That is what she said …and she handed me a script for another pain Dr. (after I’d been through 5 yrs of pain clinic for all of the pain and injuries following the car accident), and she handed me a script for “Lyrica” and sent me on my way. It was the last time I ever saw her. I went for a second, third and fourth opinion; they all said I have RSD/CRPS. But at least the 2nd Dr., a foot and ankle orthopedic specialist, gave me some paperwork with information about “What RSD/CRPS is” and what to do and where to go for help. It was nothing really, I was pretty much “stuck” with this diagnosis and felt like I was “on my own”. Sure, some of the Dr’s who’ve known me for a long time, felt bad but nobody offered me anything to help. The only one who helped me was my old pain Dr and my GP. I got on a regiment and starting doing a little better. Then after 2 years, by the 3rd one, I was told that I had “full body” RSD/CRPS. Every time and any time that I had any kind of procedure done, that was in any way invasive, my RSD/CRPS would and does spread. My last surgery, or 2nd to last, in February 2013, was on my heart and I had a pacemaker replacement along with a pectoral muscle rebuilding. My 1st pacemaker had worn a hole right through my pectoral muscle and I needed it to be reconstructed. My Neuro-Cardiologist, in Toledo, OH, asked a well renowned plastic surgeon to help with that surgery because she’s had experience with researching RSD/CRPS to find out how to lessen the spreading of it, following surgery. She did her best with an internal “BIpvucaine wash”; meaning they put a numbing medication right into the surgical wound before they closed me up. This was all in the hopes of keeping my CRPS from going to my chest. Sadly, it did not work; but I still give my very wonderful and special Dr’s much credit for trying and researching it as well.
This is the month that those of us with the fiery pain of CRPS, call “NOVEMBER” … “RSD/CRPS Awareness month”. As you’ve seen in my above description of my own history (in short form); we also have to deal with daily painful occurrences that happen to most people. Yes, this month, each year, is dedicated to RSD/CRPS. It is a not rare, but not well known, very painful Neurological, “Invisible” disease. The letters stand for “Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome”. For the purposes of this writing, we will just call it “CRPS”, as the “RSD” is pretty much being done away with in these last few years. Dr’s and those who’ve researched this disease, have found that it is actually an “autoimmune disease” with components that involve the nerves, bones, muscles, blood, and skin. It has been noted that once you have an autoimmune disease, it’s likely or a little more likely, that you can become afflicted with another autoimmune disease. Those are actually words from my Orthopedic hand specialist at my appointment last week; where I found out that I certainly and most definitely have RA or Rheumatoid Arthritis now, as well as the CRPS (as well as other health issues).
After reading some of what I’ve gone through, you might conclude that I feel alone, in pain and secluded from the “real world” because I’m unable to do many things that most of you who are healthy, can do. That might be how some of us feel, especially when we are overwhelmed with too much “on our plate”. Luckily, for me, I have a close and personal relationship with God. He helps me to look to him for comfort and get ideas on how to cope by listening with my heart and soul, to his directions. Instead of “choosing” to be a “sick” person, even though there is no real choice…you are or you are not…sick. But, I can choose how I react to that illness. I can always have a few bad days when I feel sad or “alone” in this….but I have to bounce back and be who I truly am inside. Who I truly am, is a woman who’s been through quite a lot and had much more on my “plate” than some others, but not as much as some people. There are always people who are better and always those who are worse. It is what it is ….and not much you can do to change the impact of a painful disease and what it can do to you and your family, your husband and your children. But what we can do, is find way to cope and deal with it on a daily basis. Try to use the “spoon theory” (by Christine Miserandino….you can find information about it at: http://www.butyoudontlooksick.com). It is a way to cope and do only what you need to do to get through each day and stop when you cannot do any more. Try to make good “choices” and not give up when you hit a “brick wall” with a Physician who knows nothing about this disease. Keep on trying Dr. after Dr. if you have to, until you find someone who believes in helping you. They’re out there, but few and far between. We all need to try and keep positive and even when it’s positively horrid, we can surely feel sorry for ourselves for a little while, gather up our senses, regroup and then come back and start again!
I’ve found that I simply hate feeling “alone”. I don’t have to be “alone” these days, with the technology that we have today. At any time of the day or night, on any given day of the week, during any month of the year….I can “be” amongst people. People who are in pain, just like me. People who feel like giving up sometimes, just like me. Real people who are simply other human beings with much pain and who are trying to make this life still feel meaningful. I’m talking about my CRPS “community”. WE are friends! We have found true friendship and trust in each other. There is an International group of people with CRPS! We somehow have found each other via our blogs, our groups and Facebook! This is invaluable for someone to not become so depressed with illnesses, that they no longer want to be part of society. We can “instant message” each other, in the blink of an eye. We can lean on and trust in each other far across the boundaries of miles and miles of Sea, Ocean and land. There are quite a few of us, too many to try to mention right here and now. But as I am in the USA, I can reach out to someone in the middle of my deepest, darkest painful night, and find someone else on the other side of the “pond” wide awake because it is only their lunchtime! They in turn, can type out a few words onto Facebook messenger, and we can have a conversation about the flowers, the snow, and then also….the good, the bad and the ugly of it all. We can and do Skype each other. It’s as if I am sitting in their living room and we are having a conversation face to face. We can even share a cup of tea if we want to, in today’s modern technological era! We all have and share a common bond. You may have thought that the bond was going to be “illness” or “pain”. No…the bond we share is of a much greater magnitude than even the horrible 8,9, 10+ pain we can endure at times! It is the sense that we want to choose, at least for the most part; to be positive. Not always and not every minute of every hour of each day; but as much as possible we lean on each other and try to stay in a positive mode. To go about each day in a positive way and let that shine onto others. We try to write; in order to get a message out there for awareness, respect, research and more knowledge by everyone associated with this painful illness. Many of us have started and have become administers of large support groups and we are sometimes “counselors” (without the letters after our names, but with much more in the way of respect for the pain, the feelings and the every day aspects of dealing with CRPS) for our groups and for each other. We work together to gain knowledge and to raise money for every aspect of this excruciating and disabling disease.
I will be leaving a link at the end of this blog post, actually it will be many links. It is where you will find the writings of those who live near and far across the “ponds”. It will be links to their blog posts of today’s date. We had all decided to do an International blogging post today, to show our solidarity in supporting each other in the Pain of RSD/CRPS. We are all sharing something about this month, the awareness, the lack of knowledge and/or awareness and the friendships we’ve made because of it all. Each and every one of us has done certain special things this month and throughout the year and years, to make a difference to the RSD/CRPS community. We’ve tried so hard to make that difference be something real and important. I know that I’ve been doing a fundraiser/raffle drawing this month. I’ve been raising money that will be delivered to RSDHOPE.ORG on December 1st, 2013. I’ve reached out to my one support group of over 800 people, and my google + support group, that is new and has 100 members. I’ve reached out to my friends, my family and anyone that will hear me. I started to feel sad that it is already November 22, 2013 and the end of the month is in only 8 days. I’ve only raised about $135.00 thus far. But I am so appreciative to those who have donated and as I’ve been saying all along, “even one dollar can make a difference”!! I’ve got 6 stretchy, orange and white bracelets made, to be the first to be raffled off on December 1st, after the month of November is finished. For each dollar that you donate, your name goes into the drawing that many # of times! Whereas 25.00 = your name in the drawing 25 times!!! The second half of the drawing, is for a handmade (by me, “Support In Jewelry” at : SupportInJewelry.tumblr.com and http://www.facebook.com/jewelrydesignsbysuzanne.beadsNbaubles ) Swarovski crystal Awareness/Support ribbon bracelet. The 2nd raffle drawing is for anyone who sent or sends in at least $5.00. Their name goes into this drawing one time and that crystal /awareness beaded bracelet will be 1st prize. I’ve said that if I get at least $300.00 in donations, I will also have a 2nd and 3rd prize of : a Swarovski crystal RSD/CRPS support pair of earrings and a key chain for RSD/CRPS support, will be the 3rd prize *unless a man wins 2nd prize or 1st prize and he wants the key chain, he will get to choose that first. Every penny that I collect in donations WILL be sent to RSDHOPE.ORG. They’ve helped immensely by giving me a “Mentor” when I first found out and was diagnosed with this painful disease. It was someone who had been through it already and who was dealing with it in a positive way. She answered my questions, listened to my whining and complaining and gave me advice. Now I am a Mentor and I do the same for those who are newly diagnosed. They also have so much information on their website and it is run by a “family”.
Anyways….I guess what I want to leave you with today, is that without this month being deemed “Awareness” month for RSD/CRPS, we might not have met each other. I still have many friends yet to meet and get to know. But this special group of people from this International platform, really makes me feel like I don’t have to internalize all of my pain. I can share it, write it and get it out and there are people who Will listen and those who DO care! The world is a very large place and if you can have friends in many places, it really helps you to deal with things in a much more positive attitude. They know how I feel…they know what I’m saying! They know what I mean when I say “I cant today”….. I am lost without these special bloggers, friends and International comrades…You are some very special people….thank you so much for giving me the privilege of calling you my friends. Don’t forget to check just below, as I’ve posted all of the links to my International friends, Posts’ for this “RSD/CRPS Awareness Month”/November 2013, as well. I think we’ll call ourselves the “International Blogger’s” ummm….the “International Blogger Sisters” nooo…hmmm what about….”The Bloggers Across the Pond”…OR…..ummm….. “The United Bloggers-an International group”? Well, we’ll have to sleep on that one, I’ll get back to you, luvs…..
….Until Next time…..Suzanne
List of International CRPS Bloggers (*Friends)
1) Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients… http://sylvieghyselscrpsdrc.wordpress.com/2013/11/22/blog-sdrc-international-des-amis-merveilleux-et-des-patients-experts-crps-international-blog-post-wonderful-friends-and-experts-patients/
2) Elle in the UK: An informal International network of CRPS patients… http://elleandtheautognome.wordpress.com/2013/11/22/an-informal-international-network-of-crps-patients/
3) Suzy (me) in USA: “In ASL, a Performance for NOVEMBER /RSD AWARENESS MONTH”….MUSIC is UNIVERSAL….emotions have no boundries!!:
4) Lili in Canada: Love Knows No Bounds… http://www.tamingthebeast.ca/2013-11-22/Love+Knows+No+Bounds/
5) Jo in the UK: CRPS Awareness Month International Blog Post, A Community of Angels… http://www.theprincessinthetower.org/ blog/2013/11/23/CRPS-Awareness-Month-International-Blog-Post-A-Community-of-Angels.aspx
**watch my ASL/performance of “Roar” video here: http://www.youtube.com/watch?v=0ePkDlLO2X4
**Please contact me here in comments if you’d like to donate to the RSD/CRPS fundraiser. I’ll give you my PayPal address for you to send it there if you wish