Opioids, Cannabis And Complimentary Therapies


When our Attorney general, Jeff Sessions told the pain community to take an Aspirin and tough it out; I hope he didn’t mean those living with cancer pain, A.S., CRPS, E.D.S. and many of the high pain chronic illnesses? I’m guessing that he must have meant that more for someone who strained their back by lifting a TV or a dresser that was too heavy? Maybe not? But that’s my guess. Along those same lines are “Complimentary Therapies”. In my personal opinion, if Acupuncture works for your kind of pain, that is great. If something called “grounding”, where walking barefoot and reconnecting with the earths energy can help your pain, thats wonderful too! Whatever works to diminish your pain, that’s what matters most. Insurance companies should be more than willing to pay for these complimentary therapies ahead of any major or minor invasive or noninvasive surgeries! There should be choices available to those who want and need them. But as much as mindfulness, guided imagery and “thinking your pain away”, are awesome ideas; I don’t think they generally help to curtail certain high levels of pain and pain illnesses.

Medical cannabis is helping many chronic pain patients with nausea, physical withdrawal symptoms and chronic pain. The Marijuana Effective Drug Studies (MEDS) Act, introduced by U.S. Senator Orrin Hatch (R-UT). He has proposed a bill, (S.1803) to encourage scientific research on cannabis as an effective and safe medical treatment. We need to advocate for this bill because Medical cannabis can be helpful to some people who live with chronic conditions. The U.S. Pain Foundation along with the American Pain Society support this Act.

We are fighting for a variety of methods to help those with high pain illnesses to deal with their pain. I’ve read that Kratom is another plant based fighter against chronic pain. These can be wonderful tools to help many persons. We need to keep fighting for many different methods to help with chronic pain, because we are all individuals and what works for one person, does not always work for another. Pain patients should be able to use whatever method of pain relief works for them because individual metabolisms vary. The therapies available to us, help many different kinds of chronic pain. Each method contains various medicinal qualities that work differently in each patient. It’s also true that one specific method of pain relief doesn’t help everyone. Nobody should be forced into taking or doing something that they don’t feel comfortable with.

The same is true with surgeries and injections. In my personal opinion, these continuous injections into the spine, are just “money makers” for the chronic pain clinics who are now too afraid to prescribe opioids. Even though the CDC told us that the 2016 guidelines

were just a “guide” and they are not the law. It seems as though the majority of pain clinics and Doctors jumped on the bandwagon to demonize opioids after the guidelines were disclosed. Now we are seeing suicides go up with the decrease in prescribing of Opioids for chronic pain illnesses. It seems as though there is a correlation between the lowering of Opioid prescribing and an increase in surgeries for Spinal cord stimulators, pain pumps and nerve ablations. But no one should EVER be forced into having an invasive surgery that could possibly cause more pain and stress for these already medically fragile human beings. My physical therapist told me that the SCS means surgically putting a catheter into your spine to give small electric shocks in order make you think of those shocks instead of the pain! She told me that our brain cannot think of pain and pleasure at the same time. I’m guessing that some think these electric shocks are pleasurable? I had a T.E.N.S. unit soon after my car accident and it did help with muscular pain and soft tissue damage, slightly. I have read that they’re (SCS) most helpful in people who have low back pain, leg pain or one area of pain and not multiple pain issues (http://aansneurosurgeon.org/features/neurosurgeons-rise-address-opioid-crisis-america/).

My previous pain clinic physician informed me that the intrathecal pain pump administers approximately 1/300th of the amount of oral medication needed to relieve high amounts of chronic pain. But this is also living with a literal “hockey puck” inside of your gut forever and and depending on one person to fill it! That same Dr., told me that I would be “married to him” as a patient, for life. In my research, I have found that if your physician leaves his practice, retires or if you have complications in another city/state or country; your pretty much out of luck, in all honesty! Emergency rooms and other physicians won’t normally touch another Dr’s patient with a pain pump! Again, this is another invasive surgery where your body is being cut and something is put into your spine. Complications stem from worsening pain to paralysis. Here is an article that speaks to some of the complications (http://www.stltoday.com/lifestyles/health-med-fit/health/to-your-good-health/implanted-back-pain-pump-is-an-option-for-very-few/article_474eed95-3f54-59ca-9b9b-9f8f941c0300.html). The nerve ablation or Radiofrequency Neurotomy, means literally “burning” nerves to “create a heat lesion”, thus, making the nerves lose functionality (https://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain). Each person feeling relief from chronic pain, is all that matters. We should be able to have choices available to discuss with our own physicians.

Someone who knows our past history of illness and our current diseases. A Dr. who can discuss these different methods with us and help us determine which route is best for each individual.

This past week I read an article in “Clinical Pain Advisor” (https://www.clinicalpainadvisor.com/treatments/epidural-steroid-injections-postmenopausal-women-bone-mineral-density-vertebral-fractures/article/739080/) that touched on the issues with the Epidural Steroid Injections. After having many of these injections in the first years following my car accident, now I find out that they cause decreased bone mineral density and increased risks for vertebral fractures. It appears that there are complications with every method of pain relief. We just need to be able to choose what is best for our own body. Nobody should be forced into surgeries, Acupuncture, Marijuana or Opioids. On the other hand, if one method, such as Opioids, have worked for you and you’ve literally tried many other methods of pain relief, then you should be able to continue. Taking a pill that has little or no side effects for a group of people who are doing well with Opioid therapy, should be still allowed and not demonized. I believe there will always be a place for Opioids for the relief of chronic pain. If you have been taking them for many years and are stable, then obviously you are not “addicted”. Don’t forget that there is a difference between addiction and dependency. Also, don’t forget to support the “Opioids and Stop Pain Act” (S.2260/H.R. 4733), introduced by Senator Schatz and Representatives Welch & MicKinley. The U.S. Pain Foundation, along with 30 other Pain organizations support this Act. It will provide $5 billion over 5 years for research of the NIH into the understanding of pain and the discovery and development of therapy for chronic pain.

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.

Are You Aware Of #RareDiseaseDay?


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Did you know that “Rare Disease Day” is coming soon, on February 28, 2018?  Do you  know that “rare diseases” aren’t so rare after all?  According to the the National Organization for Rare Disorders, there are 7,000 rare diseases and disorders that all together affect 30 million Americans; majority of these are children.  In other words, 1 in 10 Americans live with and suffer from rare diseases. This day is an annual celebration to recognize and bring about awareness to the public but also to decision makers.  We can each make a difference by either hosting an event, participating in online activities or doing both. Rare Disease day always lands on the very last day in February, the 28th or 29th (if Leap year). Each year we try to increase awareness and knowledge of rare disorders and bring attention to the kind of impact that they have on these people’s lives.  Most of these have no cure.  Sadly, they largely go unrecognized, under-diagnosed and misdiagnosed. Another fact is that the majority of these diseases, about 95%, have no treatments available and no cures.

The U.S. Pain Foundation supports “Rare Disease Day” and therefore we have provided several ways to include this day in your communities worldwide.  We feel that this special day “falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.”.  There are many ways that you can can become involved in this event.  One way that you can raise awareness, is by hosting an awareness event table in your city.  You may visit the U.S. Pain Foundation website at the link provided in the above quote, to read more about this day and the events surrounding it. You can also visit the www.Rarediseaseday.org  website to get more background and historical information about this day.  If you would like to participate in worldwide events you can visit:  http://rarediseaseday.us/events.

Other ways to become involved are to: “Save the date” of 2-28-18, because #NORD  will be hosting a #tweetchat (#RDD18Chat) on #RareDiseaseDay at 1:00-2:00pm EST.  You can also retweet some facts, such as this one: “There are 1 in 10 Americans that live with a #raredisease.  That is 30 Million Americans!”  You can download the special Social Media logo’s etc. and post them on your Facebook Cover picture and your profile photo.  There’s also an official YouTube video that you can share on your own Social Media accounts, at:  https://youtu.be/02zR9r-LOfQ.  You can follow them on their USA official links at: Twitter @RareDayUS, Facebook @ Rare Disease Day US and Instagram @RareDiseaseDayUS.  The Worldwide official links are here:  Facebook @Rare Disease Day and Twitter @RareDiseaseDay.  The hashtags that you want to use if you would like to spread awareness via social media are:  #RareDiseaseDay, #RareDisease, #RareDiseases, #1in10, #CuresNow and #NORD.  There is an entire list of ways to get involved right from your own home, bed or recliner; right here at https://www.rarediseaseday.us/get-involved/social-media/#1474047637908-88935dfd-3a29,

The National Organization for Rare Disorders (NORD) are the sponsors of this day and these events. But the participants in “Rare Disease Day” are the National Institutes of Health (NIH), the U.S. Pain Foundation and other patient organizations, government agencies and companies . We also encourage people to plan Advocacy events near their state capital or house to help with issues that are relevant at the state level.  The worldwide theme this year for Rare Disease Day 2018, is much needed research of various rare disorders.  When there is active research being done, it brings people who are ill, the hope they need in order to continue living and trying.

Take Our Hand – The US Pain Foundation


Take our Hand- The US Pain Foundation

It’s the New Year of 2018 and I’m reflecting on this past year, 2017. Many people ask me about the US Pain Foundation. They ask me “what does the US Pain Foundation do? What are they doing to help with the Opioid crisis?” I thought I’d explain what they are doing and what kinds of things that I do, as an Ambassador for US Pain.

The first thing to know is that they are not about accolades nor do they have a need to be in the spotlight. They do so much for those of us who live with chronic pain. They rarely ask for anything. I have noticed that when I do fundraisers; they’re more interested in how many people were helped with “Awareness”?

But for right now, I’d really like to inform you of some of the different projects that are going on within this non profit organization. Right now there are so many people being affected by issue of chronic pain patients being under or untreated. They are also being quickly tapered off of their life saving and life giving pain medications. US Pain Foundation saw a need and heard the cries of the pain community and they responded. I also want you to know that they are not all about “rescuing” people; but rather, teaching and giving the tools so that people can help themselves. If you visit USPainfoundation.org; you’ll see a myriad of resources to help.

One of the many things they are doing for the chronic pain community is that they and 31 other patient & professional organizations/groups have submitted a letter to Congress. In December 2017, these groups sent a letter urging Congress not to repeal the Ensuring Patient Access & Effective Drug Enforcement Of 2016. If it is repealed, this would hurt protections for chronic pain patients. This law would stop the DEA from limiting controlled substance pain medication distribution in a transparent way; also lacking due process and/or safety! (see this article: https://USPainfoundation.org/news/-31-organizations-speak-repeal-Patient-access-act/ )

The entire move to repeal was ignited by the “60 Minutes”story”EX-DEA agent: Opioid Crisis-fueled by Drug Industry and Congress”, which was on TV in October 2017. The persons at US Pain who deal with many of these kinds of issues, are: Shaina Smith, the Director of state Advocacy & Alliance Development.and Cindy Steinberg, the National Director of state Advocacy.

The US Pain Foundation is being very proactive for patients during this time of unrest and uncertainty. They have devised a plan for patients.. This plan can be printed out and used by patients during an emergent situation; such as being dropped from their pain physician or if they feel desperate and/or suicidal. There’s an article and resource here: The US Pain Foundation is here to help. Here’s a plan to print out & use if you’re denied pain treatment .

Lastly, I wanted to end with this quote from this article: https://www.indystar.com/story/news/2017/11/05/when-Patients-have-give-up-their-pain-medicine-Opioids/776067001 , that I truly was inspired by, “Legitimate patients with chronic pain are being forgotten,” said Paul Gileno president and founder of the US pain foundation. “The disease of addiction is taking over the disease of pain and everyone is forgetting about the Pain Patient.” It is the truth and the US Pain Foundation is trying to give Chronic pain patients the tools needed to feel more empowered. They also have designed a new app called “Ouchie”, where you can keep a log of your pain journey. Then there is Ellen Smith who is helping with another alternative to Opioids, which is medical marijuana. Ellen is a Board Member and she does webinars and teaches people about the correct use of medical marijuana.

There is a whole Myriad of options for programs and resources found on the US Pain Foundation website. We have Awareness programs, Educational programs, Support programs and fundraising programs. So please go and have a look around at www.uspainfoundation.org . You are welcome to always ask me anything, but please know that the US Pain Foundation is there for all of us!

(These views are my own & not necessarily the views of the US Pain Foundation)

Becoming Incurable Magazine Feature


Hello Luvs

I’m really excited to share this with you today! The US Pain Foundation has teamed with Victoria Suan, the producer, creator & Director of her Documentary “Becoming Incurable “. I’d written to you about 6 weeks ago regarding the feature film etc. But today I want to share this online magazine that she’s made to compliment the video compilations and her Documentary!

I am the middle of 3 persons being featured in this online magazine. I’m being featured for the illness of CRPS. This is thrilling and just so very exciting to be a part of this beautiful project to spread awareness of chronic pain and illness.

Becoming Incurable magazine feature

Introduction To: Inside Incurable Lives


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:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

https://www.flipsnack.com/becomingincurable/inside-incurable-lives-issue-1.html?0=becomingincurable

Pain Awareness Month, Take Our Hand!



Do you know that according to the Institute of Medicine, there are approximately 100 million chronic pain patients in the U.S.A.? Also, 20% of children in America have chronic pain. “Chronic pain” is described as pain that has continued for longer than 3 months. Those of us who live with pain know how much it impacts our lives and the lives of our families/friends. It affects every aspect of our lives including the ability to work, sleep and go out and have social interactions and activities. Did you know also that chronic pain costs  our nation an estimated 560 to 630 billion dollars annually in medical expenses, lost wages and productivity?

Well, my friends, as an Ambassador for Michigan, of the U.S. Pain Foundation, I’m here as a chronic pain patient myself to tell you that you can make a difference.  As Margaret Mead, a famous anthropologist, once said, “Never Doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has”.  The U.S. pain foundation which started out as one person’s dream, has turned into a mission. One which is to  inform, empower and advocate on behalf of the over 90,000 members throughout the country and all those who live with chronic pain. The U.S. Pain foundation also provides education on pain management skills and constructive ways to cope with pain and find fulfillment in life.

We can find fulfillment in life and we can be “taken by the hand” of a beautiful non profit organization, such as this.  They help us find that fulfillment, by providing chronic pain patients with increased awareness about the effects of chronic pain.  This in turn, helps result in increase access to quality pain care and empowerment for those living in pain. So, please take our hand and join together, starting this September 1st, 2017.  This is the beginning of “PAIN AWARENESS MONTH”.  Instead of running through those Facebook, Twitter and Instagram messages from other pain warriors who are participating in “Pain Awareness Month”; why don’t you take our hand and join us?

Throughout the month there are a number of things that you can become involved with. We have many awareness events and projects that you can be a part of, right from the comfort of your own home.  If you can not get out, then join in the awareness of chronic pain online. Post Memes, stories and even your story to help make others aware of our chronic situations.  Take the negative out and add some positivity and then you will get “HOPE”. You can “Beautify in Blue”; by getting permission and then putting up ribbons and signs around your community.  Another choice, if you live near something special and beautiful, such as: Mackinaw Bridge in MI, Niagara Falls in NY, or any landmark; you can get permission and ask the city to “Light Up the Landmarks” for Pain Awareness Month. Turn the lights blue on those landmarks and shout to the rooftops that “We are a part of the 100 million chronic pain patients in the USA and we want to be seen and heard”! There are also many other things that are very easy to do. Please feel free to ask me about the awareness events and fundraisers for the U.S. Pain Foundation during Pain Awareness month and/or any other time throughout the year.  You can do something as easy, like I mentioned above; like posting about your pain and Pain Awareness month on Instagram, Twitter, Facebook, Google+ and more. The list and the possibilities are endless when you just try to make HOPE a verb and DO something about it.

Pain Awareness month will start on September 1st, 2017.  It continues throughout the entire month of September each year. It doesn’t stop for us, after the month of September has ended.  We continue to support and empower you throughout the months and years. Consider being a part of something bigger and better. Think about joining a wonderful “family” of pain warriors who all help each other and help others as well.  My hero, Helen Keller, once said “Alone we can do so little; together we can do so much”.  So starting with this September, let’s all join forces and let the rest of America and the world know who we are and what chronic pain is all about.  We need you and who doesn’t like to be needed? (For information about PAM please contact me at: @PeopleInPainUnite or @RASEforCRPS on Twitter or my email at: RASEforCRPS@yahoo.com. You may also contact the U.S. Pain Foundation at:  www.uspainfoundation.org).photo sep 01, 3 13 51 am.jpg