Becoming Incurable Crowdfunding Campaign


Please watch this short video and see how this film producer is bringing awareness of Chronic pain and Chronic illnesses to the big screen!

If you prefer to visit my advocacy YouTube Channel to watch this, you can visit: WWW.YouTube.Com/Suzydukettes….

BUT my newest Youtube video is right here for you to watch -and it’s only about 4 minutes Long: I hope you will enjoy, learn & help in any way possible with the crowdfunding campaign, at: http://www.seedandspark.com/fund/becomingincurable

Here is a very short 4 minute video: (Thank you for Watching):

Becoming Incurable Crowdfunding Video

Human Rights Group Addresses Opioid Issue


 

I was uplifted to see that someone is finally standing up for the rights of 100 million chronic pain patients in these United States of America. We’ve been waiting for a group, a person, a physician or anyone to stand of for this group of people who are mostly too busy worrying about Dr. appointments and just carrying out daily tasks of living to advocate for themselves . Those who deal with daily pain are often too weak to form a huge protest, fight with signs and stand on Capitol Hill for days or hours at a time. Many of us have written letters and tried to encourage people to respond to the FDA docket. Many people have done what they could do to help, while living with illness, chronic pain and debilitating fatigue.

This past week I was so happy to find that a Human Rights group called “Human Rights Watch” has taken an interest in our cause. Someone has finally noticed that ignoring a large group of citizens who live with chronic pain and who are being largely untreated or under-treated, is inhumane! This Human rights group has reported on other forms of torture throughout the third world countries as well. They are based in New York and at last, they are looking towards helping the people at “home”, in the USA. They were doing research on cancer patients and were shocked to find that so many had lost their pain control/relief. This is considered torture in many other countries. Before this Opioid issue began, I never would have believed that the USA would want to torture their most fragile citizens? Hopefully this advocacy group will truly help this cause. They could begin by reversing the effects of the CDC guidelines and by helping to keep the government (and politics) out of practicing medicine. In my opinion, it feels as though some legislators who may want to be re-elected, make a name for themselves or get news media attention have been “using” the chronic pain community for their own gains. One example of politics mixing with medicine is the “Lifeboat tax”. A group of Senators want patients who are taking Opioids, to pay for addiction treatments centers by forcing a tax of .01 cent per milligram of Opioids prescribed daily. But the majority of people who are legitimately prescribed Opioids are not “addicted”. This is wrong and someone has to take a stand, be brave and help those who truly cannot always fight for themselves. Living with untreated and under-treated chronic pain is definitely a human rights issue because people can and do die from it! They pass away because increased amounts of pain can cause very high blood pressure, high glucose level, stroke and a heart attack. But it’s the “living” without pain relief that is the torturous part.

Honestly, removing Opioids from the bigger picture of high pain illnesses, is inhumane. I hope this Human Rights Watch group will help the chronic pain community, curb the fear in our physicians and stop the Government from creeping into our patient/Dr. Relationship and exam room. This group found that nobody has been paying attention to those suffering because their physicians “jumped ship” and abandoned them. They found that the testimonies given by some patients who have lost access to appropriate medications for pain relief, “were similar to those who were victims of police torture”( https://www.painnewsnetwork.org/stories/2018/3/15/human-rights-watch-investigating-treatment-of-pain-patients. We needed someone to be brave and step up to help our community.

If you want to help the chronic pain community and/or if you have a story of your own, please write to this group? Share your story in just a few lines. They have asked for people to send these stories to: Human Rights Watch, email researcher Laura Mills at millsl@hrw.org…They also have a Facebook page: https://www.facebook.com/HumanRightsWatch and they have a Twitter feed @HumanRightsWatch. The more true stories about increased pain and loss of treatment that can be sent to them, the better. The more real human faces that they can connect with this Cause, the more it will help to stop the continued torture of Americans who rely on Opioid therapy for relief of chronic pain Illnesses.

A “Call To Action”


I saw a “call to action” from my US Pain Foundation family in January, about the upcoming “Rare Disease Day”, on 2-28-18. I went to Rarediseaseday.org to check it out. There was so much information and 2 of my illnesses (CRPS & EDS -4/Vascular) we’re on the list! I downloaded the social media packet and started sharing in each of my groups & on all of my pages, Blog etc. I wrote to the event facilitators and they posted “my story” and a video that I had made, about CRPS.

(Here’s the link: http://www.rarediseaseday.org/stories/6082)

I was really excited to share more about this day as people started asking me more and more questions.

After calling around, I found a venue to host my own “Rare Disease Day” event. Within minutes, the Township Supervisor, Pat Williams (whose helped me with “Pain Awareness Month” proclamations etc.), found me a venue in the Canton Leisure Services building, called “The Summit”.

The event day finally arrived! But as I was getting things ready to take with me, I had a bad fall. In trying to maneuver steps without anyone else home, my foot didn’t clear the step and I stumbled while going upwards. I was in a great deal of pain, but I couldn’t let down those sho were counting on me. My husband and I decided to take my wheelchair, which I usually reserve for outings where I might be walking a bit more. I needed it and it helped me get through the evening.

This Awareness event turned out to be one of my favorites! It was in the lobby, so people were coming “in and out”. It was quite busy with people from the pool area and the gym.

Many people stopped and asked questions Like, ”What is Rare Disease day? What is the US Pain Foundation? Why are you here?” Etc. I had some medical professionals stop and we exchanged our “Rare Disease Day” online stories with each other! They showed me their photos and told me about the research they’re doing on a few “Rare Diseases.” There was another medical professional and a couple Physical Therapists who also were very interested in the INvisible project and other information that I had with me. I got the chance to give out my new chronic pain Support group information when several people stopped to tell me their “story.”

I had downloaded the Rare Disease Day info packet from the website and made copies. Those were also popular with a few High School students who stopped by my table, at first because the candy bowl caught their eye! But they told me about upcoming projects that they have to do. They wanted all the information that they could get. Not surprisingly, there were many people interested in the Migraine & Rheumatoid Disease editions of the INvisible Project. I even had the family of a Veteran, ask if they could take one of those editions home for a relative who’d been in the Korean War.

All in all it was the best event I’ve had and it felt like I reached a lot of people, answered many questions and listened to many sad stories. But I also gave US Pain Foundation information to several persons. It felt as though I was giving them hope. “Hope” for themselves or someone they love who lives with chronic pain due to a rare disease.

Lastly, I think that I recruited some new US Pain Foundation, Chronic pain Support group members. They seemed genuinely excited to have a platform to be heard and to talk with others going through similar situations.

I Am Invisible No More!


img_8628

Hello Luvs,

I wanted to post the video that I made for Invisible Disabilities Association. I was hoping to ask you for a favor? I have entered this video in a contest, in order to spread awareness of Invisible Illnesses. Would you please be so kind as to just click on the video below and then watch the 3 minute long Video? Then right above the video, after you click on it, you’ll see the word “VOTE”! Please click on that word and that will cast your vote for me!

Thank you so very much! If you could, I’d be so obliged if you could SHARE the video on your Facebook pages and in your groups, Tweets etc. It would be really awesome to make Invisible illnesses more known! Thank you for your vote, in advance. I appreciate it so much! Ohhhh please always us the hashtag #Iaminvisiblenomore thank you !

My video “I Am Invisible No More” Is Right Here, When You Click!

http://woobox.com/yskmzt/gallery/0by3nprZkI0

Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

We ARE In The Room



If you visit the Emergency rooms in Michigan, you see and feel many horror stories.  I don’t visit the ER and have not since 2007, when I was diagnosed with CRPS.  I had chronic pain even before that, from several chronic pain issues and illnesses stemming from a car accident and other reasons. But the last time that I went, I was treated like a pariah because I was taking pain medication.  They never asked me about all of the different therapies and non-Opioid medications that I’ve tried.  They don’t know all that I’ve been through.  They also don’t even ask me if I’ve ever been addicted to anything in my life.  The answer would be “NO”. I’ve never smoked anything and I don’t even drink “once in awhile” socially, not ever!  Yet, the Dr.’s and nurses treat people that take small amounts of pain meds as if we are someone to be scorned.  The amount has gone down but it’s not ever going up.  It works for me and for about 25% of the chronic pain population. Only 1% of  legitimate chronic pain patients ever become addicted to pain medications given to them by a pain management physician.  For some people this is what works after numerous other medications and therapies have failed.

I want to share with you just an overview of something I read in a Detroit Newspaper article yesterday (Link to Detroit news article  .  This is what is happening in Michigan in 2017. I’m praying for change and I’m going to advocate to help the legitimate chronic pain patients. I have already written to and gotten a response from the other letter that I wrote to the White House and Governor Chris Christie.  All that I got in return was a fancy form letter from “The White House”.   I can’t give up.  I refuse to give up hope, without hope, we have nothing left.  We must not give up and we need to keep hope alive.

This is just the summary of what actually happened to a family in Michigan.  I read in our Detroit, MI newspaper recently, and it is just a summary:   “Over on a gurney, a woman screams out writhing from pain. A Dr. stands idly by, just watching a monitor. He stood away from her as she was doubled up in pain, screaming about pain in her abdomen.  Her husband walked in and saw this and he new about his wife’s chronic pain condition(s), but had never seen anything like this from her.  The Dr. was expressionless, as if she was not even in the room and as though she was a non-feeling “thing”, a non-being person with feelings and a soul”. Imagine if it was his wife, his mother or child? Would he still feel the same?

So moving on, …”as the husband approached this so called “Dr.”,  the physician was startled and reached out his hand to introduce himself. He said to the husband, “yes she’s “complaining” about pain. He said “we will “try” to address it. Next, he said something horrifying, but not new to our American chronic pain communities.  He said “addicts often come to the emergency room looking for opioids”.  The woman’s husband knew about her medical condition and he knew enough to realize that something must’ve gone terribly wrong after the nerve block procedure she’d had done earlier that day, while he was at work.  They’d been to Cleveland and Mayo clinics and even to the U of MI hospital. This poor woman had gone through numerous medical procedures and attempted over 40 medications. They finally had found a regimen that worked to relieve enough of her pain so that she had some semblance of a life now and then. The only effective regimen was very complicated but it included Opioids”.  The way she was treated just recently, in 2017 is barbaric to say the least.

This is happening not only here in Michigan, but all over the USA.  Just today, 9-17-17, I read an article that was sent to me through my email. The article written by Julie Mack in “MLive”, discusses many statistics about Michigan deaths from “overdose of Opioids, including Heroin”. Opioids for legitimate and suffering chronic pain patients and Heroin, should not even be compared in the same sentence; let alone included together in the same article showing numbers of deaths.  The article even states that “these numbers are based on death certificates and list only deaths that specify “Opioid and/or heroin” as a factor”.  I want people to see the difference here. Legitimate chronic pain patients who’ve been doing well, taking opioids, after trying many other methods to relieve their pain; are not even in the same same category as heroin addicts.  Unfortunately, from the death certificate, they just lump everyone into one category and that’s hurting the pain patients.  We are suffering due to the ignorance of certain Government officials and the paralyzing fear that has been put into our legitimate and caring Pain management physicians.

In Michigan, a bill was recently introduced into the House of Rep.  This HB 4601 would put absolute limits on the dosages that chronic pain patients may receive. The patient’s medical history, illness(es) or lack of any proof of abuse or addiction are suddenly irrelevant. The Government would be mandating that “no doctor may prescribe opioids to a chronic pain patient exceeding 100 morphine milligram equivalents per day.” No matter what! Oh my goodness, everyone’s bodies are different and dosages can affect people differently.  If this bill goes into law,  legitimate pain patients will be bedridden and writhing in pain.  Please help us and learn about this side of HB 4601. Our Michigan Government needs to step in now, to help other government leaders and those in Washington D.C., to understand this huge gap between pain patients and drug addicts. There are two distinct groups included in HB 4601, but we are being “lumped together” as one.

In Oakland County Michigan, the Board of Commissioners has taken a stand against this historically old proposal. They unanimously passed a resolution stating that HB 4601 “infringes on a doctor’s ability to care for patients by substituting  the Legislature’s opinion for the opinion of individual medical professionals.” The board also advocated a balanced method “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary”.  Please help the chronic pain community. We are human beings and we deserve our rights and our lives protected by the state of Michigan and the USA government as well. Please don’t take the rights of our educated physicians away from the decision making process. Educate them more in the area of chronic pain management, but the doctor patient relationship should still stand.  Our Senators, Governors and even our President, need to be educated in this area.  They need to understand the differences between addiction and dependency; along with the difference between drug addicts versus legitimate chronic pain patients.

I implore you to help stop this in Michigan and everywhere. I understand that balance is hard, but we need to think of the real people that HB 4601 affects.  Slashing dosages of opioid pain medications or taking it completely away from people that it has been effectively helping is cruel and abusive. This is America! What is happening to us when the government steps in and takes away a doctors right to treat his patient effectively?  If we can focus more on the people, we would start tailoring laws to address societal harm and avoid legislative dragnets that sound good in headlines but bring danger and harm to too many  citizens. We need to do better for the legitimate chronic pain patients for whom all other methods have failed.

We ARE here, we ARE in the room.  Please join me in helping to make the government and elected official listen to our plea!

Excerpts taken from DetroitNews.com

9-12-17 “Opioids Treat Real Pain; Don’t Limit Drs”

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 & RSD/CRPS.  I’m also 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