Why I Resigned From USPF


Hello Luvs,

It is with sadness that I write this blog post today. I would never intentionally hurt anyone. Therefore, any part of the following letter, that could in any way divulge information which I’m not at liberty to share; I have put “X’s” in the place of the words I had written. But I wanted my followers/friends in the pain community to know that this was the most difficult thing that I’ve ever had to do. I loved doing this volunteer work for USPF. They always told me that we were a “family”. Yet, the very day that I lost my Long acting/Extended release pain medication, I opened an email that was just the opposite of everything I thought we stood for. Since that email, I have contemplated resigning, but did not want to “hurt” anyone or do anything to leave them without enough board members etc. But from that day on, things just went down hill. Next, I saw a trailer for a movie that stars actress Karen Duffy and our Interim CEO, called “Balancing the Pain Scale”, that I found out has been in production for 2-3 years. As a Board member, I knew nothing about this movie until someone else alerted me. I went to the trailer and was saddened when I saw the words get “beyond the pill bottle” as I was losing the one thing that had given me some semblance of a life; and so are so many of you.

Lastly, I must add that in the past, I was sent copies of kind emails that pain patients would send in about me. I was also sent emails about patients who needed my help. I never received any emails/letters such as these since becoming a Board member. Not until a disgruntled pain patient who was removed from one of my groups for being disrespectful and unkind sent the interim CEO an email. This person spelled my name incorrectly as “Susan Stuart”, she obviously does not know me and did not know me at all. I felt belittled and reprimanded by being sent the code of ethics. Especially when the issues had nothing to do with USPF and I did not use my role in any conversations with that person. I did not receive a personal phone call, nor did anyone request any information or clarification regarding the absurd complaint; after my years of loyalty to USPF. Therefore, you can read the end result in my recent letter to the Board members below:

Dear Nicole, Wendy, Ellen, (XXX & XXXX,(*2 attorneys)

When I was initially asked to join the Board of Directors of the USPF, I was pleased and excited to be joining a group that I feel is  doing wonderful things and representing the interests of the pain community.

Very quickly, (XXXXXXXXX) XXXXXXXXXXXXXXXXX However, I decided to help shoulder the burden of guiding USPF through the trauma of the aftermath of XXXXX & more. Also to stay & help with USPF losing its founder and CEO. As time went on, XXXXXXXXXXXXXX kept adding up. I decided that it was my duty to stick by Nicole  & the other Board members & our legal team, to help clean up this mess & help to guide US Pain Foundation in the right direction.

I have become increasingly frustrated because everything that was promised to me upon becoming a Board member has not happened. I was told that I could represent US pain foundation at Pain week in Las Vegas 2018. I was also told that I would be put on an advisory board and be given a program of my own to run and see through to the end. I have been told repeatedly that as a Board member I cannot officially run any programs, but others do. I feel that those things I’m most passionate about are marginalized. I feel that somehow I was inadvertently sought out & appointed to the Board, because somehow, some person(s) thought that I would just agree and not ever express my own voice and opinions. But I do have opinions and a voice. I’m sad that as a board member I don’t know who any of our donors are and I didn’t find out about the movie that’s been in production for three years, I was told? There’s so many things I don’t know but then XXXX told me that “there’s no one higher than the board”? It’s a bit confusing in all honesty. I feel “kept in the dark” about many things.

One big reason or probably the that I feel the need to resign from the board of directors of the US Pain foundation starting immediately, is due to the lack of  insurance for Board members & support group members. I don’t feel “safe” being involved with voting on big decisions yet being “left in the dark” much of the time. I don’t really know where money is going or where n it comes from in all  honesty. All the things that I used to love I’m not able to do anymore because “I am a board member“.

Last of all & sadly, I received an email today with a copy of the code of ethics from Nicole. A disgruntled pain patient from Canada, sent her note full of horrible lies & accusations. I was not consulted privately via a phone call or even given the benefit of the doubt. I have never had any trouble with not one person since I joined this or any organizations. I don’t speak or claim to speak for the USPF in any of my groups that I run. I only give facts with links to back up what I say as chronic pain patient.

For all of the above reasons and due to the fact that I don’t feel respected, I must tender my resignation from the Board of Directors  of the US Pain Foundation immediately.

Sadly,

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

Recipient of USPF’s Pain Ambassador of the Year Award‘16, Mentor & Social Media Assistant RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, patient advocate for Deaf/HoH

“Out of suffering have emerged the most massive characters are seared with scars” ~Khalil Gibran~

Thank you for taking the time to let me share with you. I feel a deep sadness and broken at this time.

Making Peace With My Pain?


*********PLEASE NOTE THAT THIS IS MY ORIGINAL ARTICLE!!! WHAT GOT POSTED IN “NTL PAIN REPORT” TODAY (9-22-18), WAS EDITED AND CHANGED INTO SOMETHING ELSE. I’M NOT A WHINER NOR AM I WEAK! I HAVE A VOICE & I’M VERY STRONG!! I SENT IN SOMETHING WRITTEN FROM MY HEART & SOUL. IT’S BEEN CHANGED INTO SOMETHING UNRECOGNIZABLE! THOSE ARE NOT MY WORDS OR THOUGHTS AT ALL. THIS IS MY ORIGINAL ARTICLE AND BELOW, YOU CAN READ MY OWN THOUGHTS AND WORDS:

Hello Luvs,

In this time of uncertainty for chronic and/or intractable pain patients please stop telling us to “make peace with our pain”. Until you have walked in my shoes, do not try to dictate what is best for my situation. If you hurt your back momentarily or you have several aches and pains, then by all means, use “mindfulness”, “accept your pain” and then “make peace with it”. I don’t care what you do with it honestly, but stop telling me/us to “make peace” with now, uncontrolled chronic daily pain at a 7/8, knowing that it’s forever. My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now.

Unless you actually live with daily intractable pain, don’t to tell me/us how to manage it. If you’re a writer, motivational speaker or a politician, stop giving advice when you don’t truly understand the nature of living with 8 chronic pain illnesses. If you have one chronic illness and “accepting the pain” or “making peace” with it works for you, then by all means, go for it!

Let me explain for those who don’t really know the person they are preaching to on social media. It’s not always Psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes things just happen that cause a very strong person to live with very high pain. When that pain gets more complicated and worsens as time goes by, and it is forever; that is when acceptance, making peace with your pain, grounding and mindfulness don’t work very well.

I was a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language. One day a man ran a red light and changed all of that for me. Afterwards, I worked very hard at 3 years in TBI rehab, 9 years of PT/OT, driver rehabilitation and speech therapy. I ended up with 2 hearing aids and prisms in my glasses for a long time. For 3 years I refused opioid medication due to the stigma or “taboo” of taking it. I did Biofeedback and the red line was “off the charts” showing that my pain was very high and I needed some other intervention. I was the woman who graduated with honors, never drank or smoked. I was not taking that medication. I worked with a pain Psychologist at a pain clinic. I had several epidural nerve blocks, trigger point injections, cortisone injections and other medications(*most either made me violently ill or I was allergic). I endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I finally accepted the fact that just as people with hearing loss need hearing aids and those with vision issues wear glasses and Diabetics take insulin; I needed to take pain medication to give me back my life, or some semblance of a life.

For 13 years, I’ve been as active as I can be. I don’t lay in my bed and wallow or feel sorry for myself. I have been a US Pain Ambassador, on the Board of Directors and even won “U.S. Pain Ambassador of the year 2016”. I’m a patient Leader for WEGO Health, have been on 3 different radio shows and I have been a mentor for newly Diagnosed CRPS patients. I have a popular blog and write for National Pain Report. I’ve done many fundraisers, awareness events and still currently lead several online groups while helping several non-profit groups with whatever they need help doing. I live with several high pain chronic illnesses, including: systemic/full body CRPS, EDS type 4/vascular, Chiari (with migraines), Right Long Thoracic Nerve Neuropathy, Autonomic Neuropathy, R.A., Dysautonomia/POTs, Coronary Spasms (Prinzmetal Angina), Degenerative Disc Disease with multiple herniate and bulging discs, Spinal Stenosis, Chronic erosive Gastritis, Gastroparesis, SIBO and multiple heart issues.

I’m at 25% of of what I was taking for the past 13 years. Two of my specialists wrote letters on my behalf, to my pain Dr.; explaining that with the multiple illnesses that I live with, the patch is and has been proven to be the very best thing that works for my pain. One of my specialist physicians wrote “why break what doesn’t need fixed? She’s been active and doing so well and this could land her inpatient and in declining health”. My pain Dr. said “this is Bullshit, his license is not any better than mine. If he wants you to have the patch then let him prescribe it”.

I continue to be quickly tapered against my will. I’m in my “Lazy Boy” recliner 16-18 hours every day.

This is what my “forever” is looking like now. I went from teaching aerobics, American Sign Language, being the Elementary schools’, Jump Rope Team coach and an active mother and then grandmother, to “living” in a recliner daily. I’m not focusing on the pain, in fact I’ve done everything to not focus on it. I went through 43 hours of labor and then a C-section, twice; while being sent home with Motrin 800 per my own choice. I’m not a “baby”, nor am I an “addict”. In fact I have a letter from the Pain Psychologist, stating that I “do not have an addictive personality”. So stop telling me to plant my feet (with open sores on them, by the way) into the earth to practice “grounding”. Don’t tell me to “make peace with my pain” or accept it; unless or until you have walked one full day in my shoes! If you haven’t experienced pain on these levels, then stop preaching to the choir. I, for one am getting very tired of defending myself and the rest of the pain community on the subject of opioid pain medication therapy. It does work for some of us just as Insulin helps the Diabetic to continue living.

**The Article Ed edited & changed totally & which appeared to be written by an illiterate 5th grader. Is in its entirety at the Ntl pain Report but for your convenience I’ve recopied what Ed Coghlan wrote in place of what I had sent to him:

Making Peace With Pain (by: Ed Coghlan)

Please stop telling me to make peace with my pain.

I can’t right now and haven’t been able to do for many years.

And it’s getting worse.

My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now. If you have daily intractable pain, you know what I’m talking about.

It is not always psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes you just hurt—a lot.

I was once a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language.

Then a man ran a red light and changed my life. I have endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I said ok

For 13 years, I’ve been as active as I can be. I have been active with a national pain advocacy group and I contribute to the National Pain Report and have worked to advance the wants and desires of the millions of people like me—people who suffer from this cruel condition.

This “reduction” in opioid prescribing has hit me hard. I’m taking  about 25% of what I was taking for the past thirteen years. Specialists who treat me have written letters to my pain doctor explaining that with the multiple illnesses I live with, the patch is the best thing for me. My pain doctor, feeling the pressure of the CDC guideline, refused to do it.

Now I’m in a “Lazy Boy” recliner 16 hours a day because I’m being tapered against my will.

Not what I want. Not what I’ve been.

I could tell you much more, but if you’re like me, you know.

It’s not fair.

Suzanne Stewart is a chronic pain patient (and advocate) who lives in Michigan. She is a contributor to the National Pain Report.

***Lastly,

This Bio which is usually on all of my NPR articles, is missing today….. here’s what it normally says:

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

This was my photo + Bio on them”staff columnists” Page under the “Our Team” Tab.

This is the email I rec’d from Ed Coghlan, after I was trying to let him know how upset I was that he “gutted” my (this) article. He added words that I hadn’t written. He changed the powerful message that was in my original story; to one of weakness and whining! Needless to say, I don’t want to write for someone that would call this an “edit”. Then send me an email at 12:05 AM, saying that he was going to publish this article in the morning (6 hours later); without ever allowing me to see the “edits”! I finally asked if I could please see the final copy and about 1:00-1:30 AM, I received the skeleton of my former original article. I begged him not to post it as it was. He’d gone to bed and scheduled it to post at 6:00 am! I was getting all kinds of comments from persons who recognize my writing when they see it and when they don’t! The rest is history!

PS- Btw, he couldn’t get hold of me on Saturday because I have recently been quickly tapered against my will; from my LA/ER pain medication that I’d been taking since 2005. I was in horrible pain from the added emotional strain from my resignation from US Pain Foundation Board of Directors & from USPF. Then the very next day this happened.

My husband called Ed in my place because I’m conscientious and would never just not respond. He told my husband that “he was not comfortable talking with him”! Well he’s also my caregiver and I wasn’t able to speak at that point. It all came tumbling down!

All You Ever Wanted to Know About S.I.B.O.


S.I.B.O – Small Intestine Bacterial Overgrowth (A Chronic small intestine infection)

1) Definition and description of the disorder: (*This is from the info that the Dr’s office gave to me): Simply put, Small Intestine Bacterial Overgrowth is a chronic bacterial infection of the small intestine. The infection is of bacteria that normally live in the Gastrointestinal tract but have abnormally overgrown in a location not meant for so many bacteria.

2) What people are saying?: I posted an article on National pain report here:

http://nationalpainreport.com/sibo-the-missing-piece-of-chronic-pain-dysautonomia-8832039.html

**Most people have been saying that they have had problems like this for up to 20 years but had no idea what it was. They took my article to their Dr and their Dr’s did not know what it was for most. But some who went to specialist GI Dr’s, got the Breath test done and then they were diagnosed and helped. There are many comments following this article, of other things people are saying about “SIBO”. Also, people have gone months, years or decades before ever getting a proper diagnosis. It is known from what little research exists, that tress, trauma, autoimmune illnesses and more, can contribute to the symptoms of SIBO.

3). Symptoms: gas/expel flatus, within Small Intestine. The gas causes abdominal bloating, abdominal pain, constipation, diarrhea or both (similar to symptoms of IBS). Excess gas can also cause belching and flatulence. Also symptoms include painful and bloated abdomen

(*looking and feeling like a 3-5 most pregnancy), nausea, vomiting, diarrhea, malnutrition, weight loss, joint pain, fatigue and chronic fatigue.

4). Possible co-morbidities: People with SIBO normally have illnesses such as Dysautonomia and/or Autoimmune illnesses. This is information given to me at the Dr.’s office. But on the website listed below, on weebly.com, it is noted that There are many conditions associated with SIBO including: diabetes, scleroderma, Crohn’s disease, and others. There is a striking similarity between the symptoms of irritable bowel syndrome(IBS) and SIBO. It has been theorized that SIBO may be responsible for the symptoms of at least some people diagnosed with irritable bowel syndrome. Autoimmune nerve damage to the small intestine is frequently a cause of SIBO.

5) Treatment Options: The treatment for SIBO is a 7-10 day course of antibiotics. They do treat the infection and so the symptoms disappear for awhile. The problems lie in that the disease that causes SIBO can’t be corrected at times. The symptoms return frequently, once the antibiotics are stopped. Some patients need to be treated with antibiotics repeatedly or even continuously. Some readily available probiotics used are: VSL#3 or FLORA-Q, but their effectiveness has not been proven. Also, Bifidobacterium infants 35624 is the only probiotic that has actually proven helpful in treating symptoms of IBS and SIBO.

6). FDA Approved medications: the approved medication for SIBO is antibiotic therapy. Also, a dietary supplement called “Allign” is often given in conjunction with the antibiotics. It is a probiotic which can help alleviate some of the bacterial overgrowth.

7) Complimentary Therapies: Allign is an OTC probiotic, that does alleviate some of the symptoms and some of the bacteria. Also, eating probiotic yogurts daily, will help cut down the occurrences of SIBO. Meditation and Guided imagery have been helpful in relieving some of the stress in the body and gut.

8) Best Nutrition: The best nutrition is to make sure that you eat yogurt and any other dietary items with probiotics in them.

*FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) are found in certain foods that are commonly poorly absorbed and fermented in people with IBS and SIBO, so restricting them can be very helpful. *there is a resource below that will help you with this and explain more about FODMAPs.

9) Best exercise regime: This can be difficult because what they have found is that exercise in any rigorous manner can actually worsen the symptoms of SIBO. But a healthy diet and walking 30 minutes daily for most of the days of the week, do help the symptoms of SIBO.

10) Local Support Groups: Right now there are only 4 support groups in the USA. They are NYC SIBO Support group, SIBO Support Group Los Angeles and the Portland, OR SIBO support group. There are several online support groups on Yahoo groups and on Facebook. The most well known for being a “good” support group, according to the article in #4 below in “informational resources”, is here: https://www.facebook.com/groups/470628319710443/

11) Links to other organizations and websites and additional info:

A) https://sibocenter.com/2016/02/resources/

B) http://www.Siboinfo.com

C) https://cemoodle.nunm.edu/

12) Personal Story for Someone to Connect with: I have had GI problems for many years and after 2002, when I was in a “catastrophic” motor vehicle accident, they increased. I had tried about 4 different GI Dr’s, but none of them could figure out what was wrong with me exactly.

They kept telling me it was “IBS”, but I knew it was something much more and different from that. IBS is enough to deal with and a horrible problem, but I was having even more serious issues. I finally found a wonderful GI Dr in Michigan. He did some tests that the others had not done. One of the tests was called a “Hydrogen Breath test” and the other was a digestive test for Gastroparesis. It turns out that I have both the SIBO and the Gastroparesis, along with Chronic Erosive Gastritis. I felt bloated and looked a few months pregnant and was having a lower abdomen burning sensation. Now I take monthly antibiotics, or pretty much monthly. I have to rotate with 3 different kinds of Antibiotics because they don’t work well if you become immune to the same one often. I stuck it out and did not give up until I found a Dr. Who would actually listen to me and not dismiss my issues, because I have so many and because I’m a “complicated case. Now I try to eat a probiotic yogurt daily and I cannot take the “Allign” due to a heart problem called “Long QT syndrome”, as it interferes with that. But I do have to take the antibiotics and I have found some relief with online and Facebook support groups for general pain issues and now one for SIBO too. I have listed everything for you above or below. I wrote an article that I have posted above for you, in the National Pain Report last year. When people commented, I was amazed at how many people had the same symptoms and no relief. Many people told me that they printed out the article and took it to their GI or PC Dr’s, and they were tested with the simple Breath test. They have also found some relief and for that I am extremely happy. If you have any questions, please don’t hesitate to ask?

13). Graphics:

A). There are some YouTube videos here:

1: Youtube video: On SIBO from Gastroenterologists : (Digestive disease week 2012)

2: Youtube video: Info about Gut Bacteria & SIBO

INFORMATIONAL RESOURCES:

1) Information on SIBO

2) also from a handout from GI Dr’s office in MI, called “Overview-SIBO-Small Intestine Bacterial Overgrowth” (the handout was found at: EE Website : Brochure about SIBO

3) IBS & SIBO INFO

4) Start a SIBO Support Group

5) Small Intestine Bacterial Overgrowth, the case of the perpetual patient : The case of the perpetual patient

All You Ever Wanted To Dysautonomia


Definition:

  1. Dysautonomia refers to a malfunction or disorder of the Autonomic Nervous System (ANS). This is usually involves failure of the sympathetic or parasympathetic nervous system; but it can also mean that the ANS may be overactive. Dysautonomia refers to the “involuntary” systems of the body. This can include: body temperature, blood pressure, respiratory/breathing, sleep, heart rate and more. Dysautonomia can be considered “Local” as it is in many cases of CRPS, or it can be a total Autonomic failure. Sometimes Dysautonomia is considered to be “acute” and reversible. Other times it may be chronic and progressive (as in Diabetes or Parkinson’s). A person may be diagnosed with Dysautonomia by itself, as a condition. It can also be associated with degenerative and neurological diseases. Dyauatonomia is actually an “Umbrella term” used to describe many different issues that occur due to the malfunction of the Autonomic Nervous System.Lastly, Dysautonomia is responsible for our “fight-or- flight” response. This is what gets our body ready for stressful situations. When the nerves of the ANS are damaged, you can get Autonomic Neuropathy as well. These dysfunctions can range from mild to life threatening.
  2. What People Are Saying: people are saying that Dysautonomia is a common ailment among people with autoimmune illnesses, CRPS, Chiari, Ehler’s Danlos Syndrome (EDS) and even Diabetes. The most common symptoms that people in the chronic pain community speak about is a fall in blood pressure during standing or “Orthostatic Hypertension” or a rapid pulse rate. Other things that are said about Dysautonomia are that it causes abnormal sweating, emotional instability and motor incoordination.
  3. Symptoms: Some symptoms of Dysautonomia *(aka Autonomic nerve disorders) are: syncope (fainting), Orthostatic Hypotension and/or intolerance, POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, Intestinal Dysmotility, constipation, Erectile daysfunction and neurogenic bladder. Other symptoms include: fatigue, light-headedness, weakness and cognitive impairment. In Dysautonomia involving the Gastrointestinal tract, the patients often feels nausea, bloating, vomiting and abdominal pain, when the ANS malfunctions.
  4. Possible comorbidities: Possible illnesses that go along with Dysautonomia can include: CRPS, EDS, Chiari, Gastroparesis, Autoimmune illnesses, Lupus, POTS, NCS (Neurocardiogenic Syncope). Other co-morbidities include: Multiple Sclerosis, RA (Rheumatoid Arthritis), Celiac Disease, Autonomic Neuropathy & Sjogren’s Syndrome etc. The worst form of Dysautonomia, which is a fatal form that occurs in adults ages 40 and up, is called MSA. This means, “Multiple System Atrophy”. It is similar to Parkin-son’s disease but MSA patients become fully bedridden wishing 2 years of diagnosis. But please note that this is very, very rare and only about 350,000 people have the MSA form, worldwide.
  5. Treatment options: There is no cure currently for Dysautonomia at this time but secondary forms can improve with treatments for the underlying disease. You can help the Orthostatic hypotension by elevating the head of the bed, rapid water infusion (given rapidly in an IV) and eating a higher salt diet. Other treatments may include exercise and healthy diet.
  6. FDA approved medications: Midodrine is an FDA approved medication that helps with the syncope and collapse.
  1. Complimentary Therapies: Biofeedback and exercise with the right amount of salt may help some of the symptoms of Dysautonomia. Biofeedback can teach you how to calm yourself of anxiety which often comes with this illness. There was a Webinar back in early Winter 2017, that US Pain hosted. It was about “Earthing” or “Grounding (”http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F and this therapy has been known to help this person; who wrote her experiences about “Grounding” helping her symptoms of Dysautonomia. *I was also prescribed a “cooling vest” to help with the feeling of overheating inside of my body
  2. Best nutrition: higher salt intake and staying hydrated are the two most important things to remember with Dysautonomia and nutrition.
  3. Best exercise regime: Exercise can be difficult when you feel very fatigued and barely able to stand at times. Also, you need to get the permission of your Physicians before starting any exercise program. Also, staying hydrated while increasing aerobic exercise, lower extremity strengthening, increasing fluid/salt intake and psychophysiologic training for management of pain and anxiety, along with family education. People also say that exercise intolerance is part of Dysautonomia but it is essential to helping with it. Start off slowly and avoid exercises that cause orthostatic stress. This includes minimal or no vertical movement, including rowing, recumbent biking or swimming.
  1. . Local Support groups: Local support groups can be found at the website: “Dysautonomia International”, here: Dysautonomia International and you may email Dysautonomia International at: info@dysautonomia for online support group resources. They do not verify the accuracy of information posted in the groups*.
  2. . Links to other organizations and websites and additional info: The best website with a lot of information here: ( Dysautonomia International ) at “Dysautonomia International”. They have links to support groups and online support, as well as diet and exercise tips.
  3. : Personal story for someone to connect with: Dysautonomia is something that I was likely born with. I was involved and injured in two automobile accidents that have inevitably made it much worse. First in 1983, I was hit by a drunk driver while sitting at a red stop light. Secondly, in 2002, a man in a pickup truck, ran through a red light and I suffered multiple injuries and had many surgeries. I also suffered an MTBI or “MildTraumatic Brain Injury”. One of my treatment team of Dr.’s is a Neurocardiologist, and he told me that my Dysautonomia was made much worse due to the “sloshing” of my cerebellum against the skull wall. I do have severe systemic CRPS, Chiari, RA, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (aka EDS type 4/vascular) and Gastroparesis. These are all hallmarks of the umbrella illness of Dysautonomia. Following the auto accident in 2002, I was fainting quite often. We found out that my brain was not telling my heart what to do, because I have Autonomic Nervous System Failure. I ended up requiring a dual changer pacemaker. It now does 87% of the work for my heart. I am very lucky to have found a wonderful specialist in Dr. Blair Grubb, MD at the University of Toledo Medical Center. He is known around the world as far away as the UK!

**Various other personal stories for me are found here at my blog “Tears of Truth” and at: tearsoftruth.com:

A). Dysautonomia/POTS & S.I.B.O. and this one: Article about Dysautonomia/POTS & SIBO

B). Another article for you!Https://Wordpress.com/post/tearsoftruth.com/9263

Helpful YouTube Videos:

A. Dysautonomia/POTS

B.Dr Blair Grubb on POTs

***Informational Sources:

1. Dictionary.com on Dysautonomia

2. Medical News Today in Dysautonomia

3. Dysautonomia International

4. http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F

5. Dysautonomia International more on Dysautonomia

6. Mayo Clinic on Dysautonomia

7. Healthline.com on Dysautonomia

8. Clevland Clinic on Dysautonomia

9.WordPress blog “Tears of Truth” on Dysautonomias

Keeping Hope Alive is Tough!


You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now. I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive. On my WEGO Health profile, my favorite words are posted. These are words that I try to live by and a phrase that originated with me, “Hope is a verb, You have to DO something in order to have it”. Now I have to practice what I have been preaching.

I think most of you know that in March 2018, I visited my pain Dr. And he did the usual random urine test. I was told in April that it showed a positive for PCP and something else, I cant even think of right now? Probably because I have no idea what these are and did not ever take them. It ended up being a “false positive” after we were charge $300.00, because HE forgot that I was taking a migraine medication that did not show up on the MAPS. He says it shows up sometimes, not others?

My PTSD symptoms have gotten worse prior to each upcoming pain Dr. visit. He has become less respectful towards me. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

The past few appointments I have not felt that respect that I had felt in the past. My Dr. was treating me differently. He got angry if I got weepy at all and he yelled at me for crying. Something changed in him and I could see it and feel it, but I was not sure what it was or why it was happening? This week I went to my appointment on Monday, 7-9-18. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me, when he used to chit chat a bit and even smile when he told me about his children. At the end of the visit, he said this to me “so we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 yrs and taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. I’ve been doing quite well and now he was taking away something that I’ve been doing very well with. Then came the “big lie”; (*which I know is untrue because I asked my Neurologist and Cardiologist and I was told it was not true whatsoever). He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me. My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8 month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, its best not to say anything”. What the heck is that all about? We are supposed to be lambs/sheep and follow orders and jump off the cliff if told to do so, without ever asking any questions? I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

Lastly, I put myself into old “abuse mode”. It was the same as the “old days” and I put myself in another place, disassociated until we could get the hell out of that room. All I wanted to do is cry and be hysterical for a few moments with the one person who loves me and who protects me to the best of his abilities and who is my soul-mate, my husband. I heard him tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

We are now at the mercy of the government in our patient rooms. He says that the state and federal government are making him do this to me. But there is no “law” that I can find in Michigan yet, stating that all persons taking Fentanyl for chronic pain must be removed from taking it now. I’m sorry that I don’t believe that you must be “heavy person” in order for the Fentanyl to work, because I was pretty much anorexic when I started it and it’s always worked for my pain. I have never had a “high” or any feelings except some relief from the pain of the several high pain illnesses that I live with and have lived with for many years. He also told me that “only those who have cancer are allowed to have these fentanyl patches now”. There is no evidence to prove that cancer pain is any worse than the pain that many of the chronic pain patients have to endure. I know there is a NORD website quote or a quote from the AMA, regarding this but I’m too sick right now to try and find it for you, I apologize. It’s easy to give advice, hope and love to people going through this, but when it is YOU who is going through it, all the love, advice and hope won’t make it better.

The same day that this happened, I awoke at 4:00 am with a feeling like someone was pressing on my left eye. When I opened my eyes, I could not see out of my left eye at all. It was totally pitch black. After a few minutes of screaming hysterically and my husband rushing to my side, I started to see patches of light in a dark mass. Then patches of the living room came into focus. After about 5-10 minutes, I could see again but not as sharp as usual with my glasses on. I went to sleep and in the morning I had a dull ache in my left eye and went to the hospital’s eye clinic that day. The Dr. Said that I had a “mini stroke” or “TIA of the eye”. My blood pressure had been high at the pain Dr. Appointment and my heart rate was 100 bpm before he even came into the room to tell me the news. He told me it was probably from stress and nothing they could do for me after all of the special testing that they did, they sent me home. I visited my heart specialist the next day and filled him in. He concurred with the eye clinic and said it could even have been an Ocular Migraine, but either/or both are from stress and can be a dangerous precursor to a stroke. I had a CVA or stroke in 2006, so I’ve been there and done that already. Today, we are like lambs going off to slaughter and nobody cares if we live or die. As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual? Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic? I guess only time will tell and all I can do is try to “keep hope alive”.

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.