Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain and I’m a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

Living Through Betrayal & Withdrawals


I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!

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

photo-sep-14-4-22-11-pm

***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”

photo-sep-19-12-54-05-pm

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!

 

Access To Our Pain Medication Is Being Threatened!


*WRITE FOR YOUR RIGHTS!

*TIME IS RUNNING OUT….YOU HAVE ONLY UNTIL JANUARY 13TH, 2016!

Hello Luvs,
I hope this finds you in better or the same shape after the holidays that have just passed us by once again?  None of us wants to go backwards, right?  If we do happen to tip backwards a little bit or even quite a bit; we must dust ourselves off and get right back at it again! The holidays tend to wear out people in the best of health, let alone, those of us in pain andor with declining health.

This is a very important blog post because I have a few things to tell you, teach you and to remind you about. First of all, I wanted to share with you that I was most humbled when I was made aware that there was an article written about me in “RSD Angel Express Newsletter” about the end of December, 2015..just recently. I will post the article in its entirety for you here after this paragraph. I was surprised, proud, excited and most of all very humbled by the whole experience.  Humbled, because this means that I must continue, not ever give up and do what I have been doing for Pain patient advocacy.

 I think the most honorable, humbling words in the entire article, that actually made me feel so very elated and proud, was where the author, Flora, wrote this “She doesn’t expect anyone to feel sorry for her, because she’s a mountain that won’t just fall over”. That just made me happy because I don’t like to have a fuss made over me. I don’t like the spotlight, unless I’m signing (doing ASL cover songs) a song!  I want to be strong and continue on helping and doing and making changes that are good for all of us.  That is what makes me happiest aside from spending time with my husband and my family.

PLEASE READ RE:  FUNDRAISERS FOR RSDSA   AND RSDHOPE:

So that was the item that I wanted to share with you and now I have a few other things on my agenda for this post.  One thing that I wanted to let you know about, inform you of; is that I have 2 (two) fundraisers going right now, to raise money for people with this horribly painful disease that I have, and about 400,000 others in the USA also struggle with:  CRPS or known as “Complex Regional Pain Syndrome”. You can get a lot of information about this disease at a couple of my favorite places:  WWW.RSDS.ORG and my other favorite is WWW.RSDHOPE.ORG.  Both are a large powerhouse of information. They both help new patients, old patients and anyone needing kindness, information and/or advice.  RSDHOPE concentrates largely on spreading awareness and information. That is their main goal and target.  Keith always says that “the money for research and other ways to help us,  will find its way to them at just the time it is needed.”  RSDS is also full of help and education for the patients. Jim Broatch, who is the “father-type” of person, who is very very helpful and kind as well; is pretty much in charge over there (*he is executive VP and Director) at RSDS.  They concentrate on the here and now. They want to help people who need help by having #1, a scholarship program. It is where people who need a certain expensive test and their insurance won’t pay for it, or they need some kind of medication or treatment and they are unable to pay, they can put in to ask for this scholarship and fill out some forms. Then if it is approved by a board of persons who oversee that, then they send the money to the people to help out.  The other thing that I find pretty darned nice, is that they have this “Penny the pig” little orange piggy bank that they will send to anyone who asks, and you fill it up with your pocket change and send it back, or send back the money to them and maybe even fill up the “pig” again? What it does, or what they do with the money from the piggy bank is they put it all together and send kids with CRPS to camp in the Summer! Isn’t that awesome?  They are both pretty special groups, run by pretty special people.  RSDHOPE has a “Mentor” program, of which I am a part.  When someone is newly diagnosed with CRPS, they will assign a Mentor; someone who has had CRPS for a longer time period, and the Mentor will talk to the “newbie” and help however they can whether it be a chat, an email or a smile that they need. So about my 2 fundraisers that will be going until beginning of Summer in 2016, the links to get to them both are going to follow this paragraph.  You can choose which of the two big National and well known organizations to help! It is totally up to you and you will go here to donate to RSDHOPE.org (any amount will do…please?  Really anything is going to be helpful : *click here> Fundraiser for RSDHOPE & money goes to all aspects of helping    *(www.firstgiving.com/fundraiser/Suzanne-stewart/CRPSfundraiser **this one is for RSDHOPE.org) and the 2nd one is for RSDSA.com, and it is here: (www.firstgiving.com/fundraiser/Suzanne-stewart/RSDSAinmemoryoffriends). *click here> Fundraiser for RSDSA & in memory of friends we’ve lost to this illness ….now I’ve given you the direct link or you can click on the blue URL link and it will take you directly to the website! If you can give anything, that would be so great and so very awesome! If you cannot donate, maybe you could use your : webpage, Blogs, Twitter, and/or any other social media to SHARE these fundraisers and help out in that way?

INFORMATION RE: THE CDC & THEIR VIEWS ON OPIOIDS; HOW  TO GET YOUR LETTER TO THEM & WHAT YOU CAN WRITE: *good information please read if you take Opioids, plan to take them or if someone you love is taking them!!

The last but most pressing matter that I wanted to speak with you about is of utmost importance!!! I saved it for last so it would stick in your mind and you would really do this for yourself, for everyone in chronic pain and for the freedom we should enjoy living in the USA! The list of people that this will help, even includes our service men and women who get hurt  and then must live in chronic pain for the rest of their lives, just as those of us with our several different chronic pain diseases; be it RSD/CRPS, Neuropathy, Diabetic Neuropathy, Degenerative Disc Disease, EDS, Chiari Malformation and the list is endless.   So this is what it is my friends, ***WE HAVE ONLY 8 days left to do this task and please, could everyone who is reading this please do this small favor your friends, family and even yourselves; whether you are in pain or not, we need your HELP??

The CDC was going pretty much “behind closed doors” and they got a group of people who don’t have our best interests at heart, but more in their wallets. This group of people decided that “too many people were dying from what they call “Opioid abuse” (even though they wouldn’t be stopping the culprits, the so called “addicts” or the illegal “pill sellers and pill poppers” ) they want to STOP allowing those of us living with chronic pain to have  access to Opioid pain medication. They believe we should try things like: diet, exercise, Psychiatry, Nutrionists, Acupuncture, massage, biofeedback and their “treatments centers”!  YES, I did put “their” treatments centers in there. It was not a mistake !  You see, the health advocates and others found out that this group of people who the CDC got to make this very important decision could hurt and has the potential to “kill” people living with daily chronic pain!!  They could do this  by taking away all access to Opioids for “all non malignant pain and allow it only for cases of malignant pain”!  Well, after a snap decision was made by this group of random people (and not including any chronic pain patients themselves), a decision that was made in secret and behind closed doors in a quick manner, to stop the prescribing of Opioids for any chronic pain patients.  This means that the woman (similar to me) who has been on them at a bit of a higher dose for the length of 15 + years, could die because the next time she takes her script to the pharmacy, they could and will deny her the medicine her body has become tolerant or dependent on.  She is not an “ADDICT”! The percentage of people with chronic pain issues who actually become addicts is very very low, at only about 5%! This woman could die!  Or the man who has served our country and lost his limb; and he has “phantom limb pain”, could commit suicide because he will now have no access to his pain meds, that were maybe prescribed to him by his GP, due to money problems?  Maybe he cannot afford to go to a specialist?  These are hypothetical situations and let’s hope this never happens!

We don’t want this to happen! I just cannot believe that they did this with a group of people who could and will benefit from our lack of real care.  We found out that several of the people that made the snap decision to “start this war against the chronic pain patients” stood to gain from our loss of life and/or quality of life!  Some of them owned treatment centers, acupuncture clinics, & massage studio’s!!  Some others were to gain from the use of more Spinal cord Stimulators & Pain Pumps.  It’s  ludicrous that they  have our lives on the line so that they could make a few pennies! It is awful to think that Dr.’s could be forcing people to have surgery, sometimes very risky surgery to their spine; because they will be unable to take a “pill” for their chronic pain!!  Well, not really “unable” but not allowed by law!

So this is what we need to do! Please write to your Governors, your state representatives  and tell them what is happening! But first, please write to the CDC BEFORE  JAN 13th! On the 13th of January at midnight, the CDC will stop taking our comments about this. I will put all of the information at the end of this writing. But you need to tell them in your own words, what is wrong with you or what your chronic pain is all about!  Tell them what you used to do for work and what you can and cannot do now due to pain. Tell them in your words what this would mean to you if they took your medications away from you ! Something that has possibly been helping you for years and then suddenly you could not get it What would happen to you Be passionate but direct. Do not be nasty or degrading and do not use cuss words please.  Be. Classy & truthful but plead your/our cause!  Write your letter in Word and make sure you have word count on because you are allowed only 5,000 characters! Please make sure that you write at the top of your plea, the “DOCKET # which is: CDC-2015-0112-0001”.

Go to this website for the CDC:  you can copy and paste right from Word if you would like, or you can write directly in the box for comments on the website because it also has a count for words on it. It lets you know when you are getting close to the 5,000 limit. Remember to tell them what you used to do, what you can do now and how the medications help you. Make sure you add if /where you volunteer or if you are doing so online or in a place outside of your home. Some diseases are not recognized by the CDC,  and one of those is CRPS/RSD. If you have this, then please discuss the McGill pain scale and how CRPS is at 43 on this national pain scale! I would tell them that the Federal Government recognizes CRPS/RSD as a “Disability” by SSDI standards now days! You may want to list the National Institute of Healths’ definition for your illness. For CRPS/RSD, that is this:

“Complex regional pain syndrome “CRPS”is a chronic pain condition most often affecting one of the limbs, usually after an injury or trauma to that limb.  CRPS is believed to be caused by damage to or  malfunction of , the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area.

There are two similar forms, called CRPS-1 and CRPS-2, with the same symptoms and treatments.  CRPS-II (previously called Causalgia) is the term used for patients with confirmed nerve injuries.  Individuals without confirmed nerve injury are classified as having CRPS-1 (previously called Reflex Sympathetic Dystrophy Syndrome) .  Some research has identified evidence of nerve injury in CRPS-1, so the validity of the two different forms is being investigated.

CRPS symptoms vary in severity and duration.  Studies of the incidence and prevalence of the disease show that most cases are mild and individuals recover gradually with time.  In more severe cases, individuals may not recover and may have long term disability.”

OK, so now that I’ve given you the tools, please go to this CDC website and start writing to help your cause and our cause and the cause!  Don’t forget, if you are not suffering, maybe someone you love is suffering! Do this for them, please!  Go to:*Click here >> The CDC Guidelines “OPEN COMMENTS” page   <<…write your comments and please do NOT forget to add the Docket # at the top of your comments or they won’t accept it!  Again, the Docket # is:  DOCKET #CDC-2015-0112. …if you are someone or know someone who needs to write to the CDC to help this Cause, because you do not have a computer, then you can write your comments to:  National Center for Injury Prevention and Control, Centers for Disease Control and Prevention….DOCKET #CDC – 2015 -0112……. 4770 Buford Highway N.E., Mail stop F-63, Atlanta, GA. 30341

I hope you will do this for yourself, for someone that you love who is too sick to do this for themselves!!! I pray that we will be able to be a force to be reckoned with!  Let them know in a strong but kind enough way that we will not sit idly by and let our lives go to dust! I am a grandmother of 2 and one more on the way in June ’16.  I’m a wife for almost 20 years and I want to live! Chronic pain can kill you if it is not put under control. It can cause a ripple effect of more medical issues!  There will be more suicides and deaths if they succeed in what they are trying to do to us.  I cannot even believe that we are at an issue over taking a pill for pain.  Something that was developed many years ago and found to be helpful for people living with chronic daily pain!  There’s a huge difference between a chronic pain patient and a drug addict!  So let’s show them that we will stick together and help ourselves and each other!

Much of the statistical information was found at the Pain News Network and their daily columns. There were other information sources that were found on the Internet and at a Facebook CDC info page ( at:  https://www.facebook.com/events/1099948746690760), also I got some info from the National Pain Report newsletters. The NIH definitions etc were found at the NIH website. *Some of the above is my own personal opinion and I am not a medical personnel; but I have been a health advocate for 12 years now, since 2007.

I would like to share one more thing with you. The CDC was ready to implement these limitations on us, until. They were threatened with a lawsuit. The Dr’s who were on the panel which decided that pain patients could no longer have the medications that we need, are called “PROP” or Physicians for Responsible Opioid Prescribing (they are not for the Responsible prescribing of Opioids, in my opinion.  They are “AGAINST” THE PRESCRIBING OF ANY OPIOIDS FOR ANY KIND OF NON-MALIGNANT PAIN!).

**LASTLY, DID YOU KNOW THAT A FEDERAL SPENDING BILL REQUIRES THE VETERANS ADMINISTRATION TO ADOPT THE CDC’S OPIOID GUIDELINES BEFORE THEY ARE EVEN FINALIZED!!!!! OUR POOR INJURED VETS WHO HAVE SERVED OUR COUNTRY AND HAVE BECOME CHRONIC PAIN PATIENTS, WILL NOW HAVE NO WAY TO ACCESS THE OPIOID MEDS. THEY HAVE BEEN HAVING TROUBLE RIGHT ALONG! MY OPINION….SO SO NOT RIGHT, NOT FAIR!! (Info from PainNewsNetwork.org)