Please Help This Blog Win?


Hello Luvs!

This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!

 Here’s the link:

https://awards.wegohealth.com/nominees/562

It’s WEGO Health awards Time Again!


Hello Luvs,

I’ve missed writing to you with that salutation! I’ve been writing so many of my posts as articles for the Ntl. Pain Report, that I’ve not had much chance to get close and personal with you!

I posted my newest American Sign Language video for you because June is PTSD Awareness Month.  This is the last day of June 2017, and I wanted the song “Concrete Angel” done in ASL to be posted for you.  It was to honor the time of year for PTSD Awareness and all of the abused children and people of the world! I don’t know if you’ve read any of my private posts or more posts towards the beginning of this blog? That’s where I have my posts about me being abused.  If you’d like to read about my journey and possibly the parts that are private, please just comment or message me and I’ll send you the password so that you can read all of the private posts!

I also want to let you know that this year once again, I’ve been nominated for a WEGO health award. I’m always very honored to be nominated. The only reason that I didn’t participate last year was due to the rule of having to ask people to vote for me daily on Social media. This year that’s not a requirement, so I will possibly ask you just a couple of times, to vote for me this year. Mostly I’m asking and very excited that We’ve been nominated for “Best in Show BLOG”!! I’m so excited about this because it’s about this blog and being nominated for an award! I’ve posted the link to vote for me on the menu to the right and I’ll post it here now again.  If you could find it in your heart and if you have a moment to vote; also if you enjoy this blog, please vote for this blog at:  https://awards.wegohealth.com/nominees and you may look for me by photo, name “Suzanne Stewart” or my Twitter handle @RASEforCRPS.  Thank you so much !! Also please feel free to share my nomination so that others may also vote for this blog! 

I won’t ask you again to vote for us, on my blog. I may post on twitter or Facebook and ask people to vote a couple of times. I’m grateful for anything! Again I bow to you and say “thank you!” 

Sincerely,

Suzanne Stewart 

https://awards.wegohealth.com/nominees

Why I Wish To Be An Ambassador for U.S. Pain Foundation? My Pain Journey…


 

**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN,  FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016

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***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”

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


Hello Luvs,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From ASL Interpreter To Hearing Impaired in 10 seconds


Hello Luvs,

I truly try not to complain or ask for help often; but I’m having a rough pain night… When I feel like this I find something that makes me feel good and I try to do it, read it, play it, sing it, sign it Etc. Tonight I can’t sign it so I watched myself sign the ASL cover for @Hold On” by Wilson Phillips… It did make me feel a little better if only for 3-4 minutes. Then I thought that I would share it with you! Because if I’m having a rough night, others must be as well. You see, I’ve tried to make some lemonade when life’s tosses lemons at me!

I used to be a sign language interpreter for the Deaf . I graduated from university with my degree in “Sign language studies / Interpreting”. I was a single mom (but I’ve been remarried now almost 20 yrs to my soul mate), worked full time at university of Michigan hospitals as an interpreter for patient services. I interpreted for Deaf students at 2 school systems “Magnet” Hearing impaired programs & at Madonna University in the classrooms.

In 2002 when a man ran a red light I lost so much: not only was my car totaled, but my body & my career. I suffer from chronic intractable pain. I’ve had multiple injuries, surgeries (8), a heart attack and a stroke! I suffer from Dysautonomia / POTS / Autonomic Neuropathy, polyneuropathy in Collagen Vascular disease(like the vascular EDS), Arnold Chiari I, Sick Sinus Syndrome (with a pacemaker), S.C.I.D. (severe combined Immune Deficiency disease), RA ,OA & the worst is CRPS, or aka “Complex Regional pain syndrome”. The CRPS started in my right foot after a surgery. It then spread to my right knee, left foot & knee.

In 2013 I had what was supposed to be a simple pacemaker replacement surgery. It turned into a long & difficult pacemaker and pectoral muscle rebuild surgery! Afterwards at my 6 week post-op check up, my CRPS was reassessed  by my Neuro-Cardiologist. He said that it had progressed to” full body/systemic CRPS, severe & disseminated”.

My career was taken from me! I also suffered a TBI in the car accident and was in brain injury rehab for 3 yrs! Id been an Interpreter for the Deaf & Blind and now I’m hearing impaired & I have 2 hearing aids. I can’t process signals of spoken language the same as I could.  My brain isn’t able to switch the words into another language whilst coming out of my hands & arms any longer. That connection was gone or at least now too slow for interpreting!

My short term memory is “in the toilet”, according to my neuro-psych tests. My love and compassion for helping people, especially children, is still  in my heart but the injuries stole my career from me. I was so very sad! Then I thought “how lucky that it’s me because I know ASL fluently, I can read lips well & my long term memory is in tact. I remember all of the signs! Artistic ASL is emotional and beautiful. It has awakened the “old days” for me when I lived in Az & worked at school for the Deaf with Deaf pre-schoolers! It has reminded me of when I was involved in 2 Drama groups w/choreography in ASL to songs! One was called “Silent Impressions Productions”, we put on shows at ASU! The other group was called “Silent Praise”, & we Interpreted at church, did interpretive dancing & signed to beautiful songs at the Neumann center at ASU! I was lucky to still have my gift yet in a different way. Watching  songs done in artistic ASL is emotional and so beautiful.

I started signing beautiful songs again, which made something wonderful stir         inside of me once more & brought the sparkle back to my eyes!

I started a “You Tube” page (ASLSuzyQ) and a facebook page (I Luv ASL) for my ASL songs. thought that if I could be cheered up …then maybe I could cheer up others who are hurting, sad or both? So “Hold On”…Don’t give up and watch this & maybe, just maybe it’ll cheer you too!

https://youtu.be/cjrMvKpxge0

 

 

 

People With Pain Matter


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

 

My Letter To CNN


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Tonight I watched a CNN “Town Hall Meeting”, with Anderson Cooper, Dr. Sanjay Gupta, Dr. Leana Wen and Dr. Drew . This was nothing like what a “Town Hall Meeting”  is supposed to resemble! It was “one-sided” ……..and there was no one sticking up for the rights of chronic pain patients. Oh,I know that they were there. They were in the audience just hoping and waiting for their chance to get out “our” thoughts on the subject of Opioids. They’re  being slowly taken from us as we writhe in pain and the so called “Dr’s against opioids” want us to “think our pain away”!  Better yet, why not have a CRPS patient with Allodynia (hypersensinsitive to touch)/ pain patient, get a massage??  Once & for all,  an “addict” is not the same as a chronic pain patient!  Pain patients are not addicts. We do not “crave” our pain medications. We do not have overwhelming thoughts about our meds and we do NOT get any kind of “high” by taking our prescribed dosages in a responsible manner!  This is what I’d like to say to the producers, Dr’s & Mr. Cooper, at CNN!  Those persons who hijacked what was supposed to be a “Town Hall meeting”. But in real such arenas, you get to hear from both sides. This meeting was more like a documentary against the use of Opioids!  At one point Anderson Cooper allows a long time Opioid user, who’s a chronic pain patient, to take the microphone. She says that she’s been having a better life while taking the Opioids responsibly for over 20 years! She was “cut off” mid sentence by Dr. Drew, who tells her and everyone else that “she us NOT the Norm”!  It got worse and more against “us”/ the people living with chronic pain, as time went on!  Here is what I’d like to say to them should I get the chance:

This letter is not only for CNN’s Anderson Cooper, but for Dr. Sanjay Gupta, Dr. Leana Wen & Dr. Drew;

First of all, I’m writing not only for myself, but on behalf of all Chronic Pain patients. Number 1: The Disease of addiction is NOT equal to the Disease of Chronic Pain! They are not one in the same! That so-called “Town a meeting” on CNN this evening was not one at all! A true Town Meeting is an open forum that promotes Democracy! Tonight, Anderson Cooper & CNN’s “get together” with Dr.’s Drew, Gupta & Wen; was more like a one sided opinion/discussion meeting! Only one true chronic pain patient got to speak! Not only was she interrupted, but then Dr. Drew had to make sure to say that she “was not the ordinary”!

I’ve been a patient with chronic pain since 2002 s/p a MVA! Then after those multiple injuries, 8 surgeries and more pain than I want to remember, I got the worst form of Chronic Pain, called “Complex Regional Pain Syndrome”(it is #43 on the McGill Pain Scale. It’s right up there with cancer, childbirth & amputation of a finger). It was then, that I truly knew what chronic pain was all about. Or so I thought, until my CRPS went systemic/full body, s/p another surgery in 2013.

Mr. Cooper, at your meeting,it was mentioned that “2 million Americans misuse Opioids”. But do you know how many Chronic pain patients take their medications just as prescribed? The majority of Chronic Pain patients are conscientious in taking their prescribed Opioid pain medications. We do not CRAVE or get a “high” from our prescribed pain meds. Nor do we allow our pain meds to control us or our every thought. On the other hand, an addict is controlled by his drugs! That’s one main difference between pain patients and addicts. I control my medications, they don’t control me! Dependence and addiction are completely different. Many meds can cause withdrawals when cessation begins, for example: blood pressure medications, anti-depressants, Beta Blockers and so on! Do you know that “WE” (Pain patients) get lumped together with Heroin addicts? What if your mother or sister suffered 365/24/7 with horrible fire-like burning pain, like that of CRPS? Would you be so quick to push them into a category with “drug addicts”? What if they were under a reputable Dr’s care and taking pain medications in order to function and be able to get out of bed in the mornings?

Untreated Chronic Pain kills too! Opioids have been prescribed for pain for many years! Why punish everyone for the actions of a some?  When we are taking our pain medications responsibly and as prescribed. While we are under the care of a Medical Doctor who went to school for many years to learn his job; (whether he /she be a GP or Pain Management specialist).  This Physician took the oath to “Do No Harm” and as long as they’ve been prescribing responsibly; then there’s no reason for any of this! It’s just the latest hype by those who are “on a mission”! The people who are up in arms about this subject, are those who stand to lose the most money if we are allowed to just continue taking the medications that work for some of us! I’m talking about The Private clinics that are getting $2,000 cash, per Ketamine infusion because insurance doesn’t pay for that. Desperate people in horrible pain are willing to pay cash to have some sort of hope or even short time relief!! (**Ketamine is a much more dangerous drug! It’s used in Veterinary medicine , to tranquilize a horse)! Others that stand to lose money are the manufacturers of the spinal cord Stimulators and pain pumps, along with Massage & Acupuncture centers. Why let us take an inexpensive pill that has worked for several years? If something is and has been working, please don’t take it away?

The Disease of Chronic Pain does not Equal the Disease of addiction! Lastly, people suffer because Chronic Pain is not only stigmatized but it’s under treated. Suicide rates rise & will continue to do so, due to this lack of treatment & lack of availability of the medications required for the relief of chronic pain. Also because physicians are “running away” and closing their doors on chronic pain patients because of the fear that they now have of being taken away to jail just for doing the job for which they went through many years of schooling and took an oath to “Do No Harm”!

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