My Deaf Journey


I was mild HOH growing up. At first my teachers had me sit at front of the class.  When I entered upper elelmentary,  I was given a hearing test at school and ended up having to undergo 5 ear surgeries, starting at age 5. Like many parents, mine just wanted to “fix” me. Most of my hearing loss in the beginning, was from reoccurring ruptured eardrums, repeated head trauma and abuse.

As a preschool age little girl,  I remember being curled up in a ball, in a chair or in my bed, rocking and crying uncontrollably because the pressure in my ear was so painful. I had horrible ear infections, one after another constantly. My mother would look at me as a 4 year old child and tell me “don’t worry, once your eardrums rupture, you will feel better”. Of course, this is true; but why not get help for me right away?  Why not take me to get help before the ear infections get to the point of rupturing my eardrums? Once the school nurses detected a hearing problem in elementary school, then I was taken to an ear, nose and throat Doctor. I had numerous Myringotomies (ear tube surgeries) between the ages of 7 and 12 years old.

When I was 11 years old, I met a Deaf family. They taught me so much about Deaf language/culture/history & community.  They took me to their residential Deaf school, Deaf football games and to Deaf events. I learned my first ASL vocabulary from that Deaf family. I was at their home constantly because they let me babysit and I became immersed in Deaf community and culture.  I had to learn quickly because they were a full ASL family.  Later on, I became an ASL Interpreter after I graduated college. I was a hospital/medical and educational Interpreter. I also interpreted for my Alma Mater & did that for several years. I continued working as a University classroom Interpreter, part time, even after becoming a Mother.

In 2002, I was in a catastrophic car accident. I suffered multiple injuries/surgeries & a traumatic Traumatic Brain injury (TBI). My hearing & vision declined. I diagnosed with a Convergence insufficiency in my eyes, halo vision and Extreme Dry Eye syndrome (because my eyelids don’t close 100% due to the head trauma & stroke). I got special glasses with prisms in them. I also had to get a pacemaker because my brain would not tell my heart what to do. It was at that time that I got my 1st set of hearing aids.

As time went on, my hearing declined more .  In 2014-2016, I had repeated double ear  infections again.  I lost more hearing. Later in 2019 -May, I went in for new hearing aids and they found an auditory tumor called “Cholesteatoma” (Information regarding Cholesteatoma & information regarding Cholesteatoma ). It had “eaten away” at my 3 ear bones/ossicular chain and mastoid bone. My eardrum was torn badly. I lost most of the hearing in my right ear and there’s severe loss in the left. I was also diagnosed with Tympanosclerosis (Information regarding Tympanosclerosis) or hardening of the eardrum. *{There’s more information about this below}.

I’ve been communicating with ASL & have been a part of the Deaf community since 1973! During college, I used to go every Thursday evening to the D.A.D. (Detroit Association of Deaf) bowling events. I had a Deaf boyfriend for quite awhile during those years & hung out in the dorms with my 16 Best friends; who happened to also be the Deaf students. We had so much fun and got into a tiny bit of fun trouble! Lol…

Later, I joined 2 ASL drama groups; after moving in 1982 to Arizona. In one group, “Silent Impressions Productions”, we had costumes & choreography. Tickets were sold & people paid money to see our show “Nights on Broadway ASL”, at Arizona State University. I was also in a Christian ASL Drama group at the ASU Neumann Center. We did ASL Christian song covers & Interpretive dance. That group was called “Silent Praise”.

I had originally moved there in order to work with Deaf PRE-school children! We taught the children during the day & in evenings, weekly; we taught their parents/families ASL. I KISSFIST (love) that job! After a year & half, I missed my friends & my home & so I returned to Midwest!

After coming back home, I did a little modeling & went back to Interpreting at my Alma Mater. I married & had 2 baby daughters. Fast forward to 1991, & I had to take my baby daughters & myself to a domestic violence shelter because I had been abused again for the past 8 years. As long as I felt that my daughters were safe, I stayed in the home. Once I saw my ex husband, kick our dog in front of our daughter, I knew it was time to leave that marriage. No matter how scary it may be “out there in the world as a single Mom working full time”- it was more scary to stay & continue on that way.

After I served him with divorce papers, I was offered a job within 3 days, as a school district interpreter! It was my dream job! Then later, I got a job (to get better health insurance) at a University hospital. I was a secretarial & clerical “float”. I learned 500 people jobs and worked all over the hospital wherever needed. I also wore a pager and was called to interpret all over the hospital. I got to keep interpreting for the school district on 1/2 day Weds. & on Fridays.

In approximately 1994, I made a new friend. She is Deaf & she introduced me to her two daughters & to her friends, who are also a part of the Deaf community. My daughters became good friends with her kids! She and I are still good friends today in 2020.

I had started a “Sign language club” at my daughters’ elementary school. I did it for my friend , her daughters & my own kids too. I also interpreted for her daughters’ IEP’s.

In 1997- our Sign language club “Silent Impressions”(yes…named after my old choreography/ASL group in AZ), was invited to Madonna University (& other venues) to put on a little ASL performance. It was a great time in my life! I was given an award from the school district, called “Volunteers in public schools Award- (VIPS award)”. It was for my volunteer work. I had been the elementary schools’ jump rope team coach. But I also helped: in classrooms, during field trips, in the the library & initiated & ran the Sign Language club. I was honored, but my reward was not that; it was giving inclusiveness to my friend. It was also about educating our children & many others & giving them a good experience along the way, in their lives.

I Re-married & finally to my soul mate, in 1997. We have been happily married for 23 1/2 years. But in 2002, we were involved in a catastrophic car accident. A man drove through a red light. Luckily, my husband only got a few bruises. I was hurt badly & unconscious for 30 minutes. I suffered a TBI, 11 surgeries (along with multiple painful diagnostic tests) & many injuries. These included more hearing loss & vision lowered due to Convergence insufficiency & halo vision. I ended up with 9 years of PT/OT and 3 years of brain injury rehabilitation. I got my first pair of Analog hearing aids, from my ENT & audiologist. Lastly, I had a stroke, a heart attack and a pacemaker! I was diagnosed in 2007, with the most painful nerve autoimmune illness known to mankind, “RSD aka CRPS” (#47 out of 50 on the McGill pain scale). The RSD/CRPS led me to several other connected & painful health issues (EDS-4, Chiari, Gastroparesis, S.I.B.O., Dysautonomia/POTS, Atrial fibrillation & Sick Sinus Syndrome (a heart condition) . I had to go on disability & have been living with mobility aids, including leg braces (AFO’s), loft-strand crutches, a walker & wheelchair etc.

But nothing has been as scary to me as the diagnosis I received after my hearing started declining more and more from 2014 to 2019. I actually was Hard of Hearing and I did fine with ASL and hearing aids. Yes, I can speak but I prefer ASL. I was diagnosed with an auditory/brain tumor called “Cholesteatoma”. It destroyed my 3 hearing bones and my inner ear. I had to have a Tympanomastoidectomy with oscillar chain & Mastoid bone cut & cleaned-out. I did receive a prosthetic Anvil (Incus) earbone also. But I was also diagnosed with “Tympanosclerosis”(Information about Tympanosclerosis & Hearing loss). This means that my eardrums are hardening & will continue. With this diagnosis, added scar tissue & the tumor (which has a 50% chance to return); my hearing will continue to decline. For now, my right ear has severe mixed hearing loss and Left is high moderate/severe sensory neural hearing loss. I also have pulsating Tinnitus. I received new Signia hearing aids in May 2019 and they are a tool. But since the auditory tumor surgery 7-26-19, I identify as Deaf instead of HoH. I belong to Michigan Association of the Deaf & a few online Deaf groups.

I have my own Facebook group called “ASLExpress” & a Facebook page called “ASL SuzyQ”, where I advocate and share Deaf history, culture and ASL. I also have My YouTube Channel @ASLSuzyQ and My Instagram @ASLSuzyQwhere I share Deaf memes, ASL songs & other fun stuff, including Deaf experiences & stories. *Then there is my TikTok page where it is just all in good fun! My TikTok Channel/Page

Link to “This Is Me” in ASL by Keala Settles (from Greatest Showman)

This was me a year or more after the
catastrophic car accident in 2002

This is me, post-op, after my auditory
surgery 2019-July
This T-shirt was a gift from the parents of kids
This is me at my “Silent Praise” group

A newspaper article honoring me for the
VIPS Award

My class with me at Deaf pre-school

9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/

Pain, Politics, Suboxone & Bupenorphrine


Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.

Pain, politics & Suboxone/Bupenorphrine

***I APOLOGIZE THAT TBIS VIDEO IS UNAVAILABLE AT THIS TIME*****

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 Know About 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

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.

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


Living With Invisible Illnesses


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

The Many Faces of Dysautonomia (NPR Article #10)


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Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how those who live with Dysautonomia feel much of the time. If the temperature drops and we get just a little bit cold, then we are freezing cold, our lips turn blue and we are shivering. It takes our bodies a long time to regulate when there’s a temperature change. We may start to sweat and feel so very hot from the inside out!  Many people don’t seem to understand the  fatigue, heart racing, inability to adjust our body temperatures, the GI upset,motility issues, inability to sleep or the pain. All of these feelings fall under this medical condition called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berserk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory, breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

Quite often those with Dysautonomia also live with Postural Orthostatic Tachycardia Syndrome. POTS causes feelings of being light-headed, fainting, dizzy, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold, as I mentioned above with Dysautonomia. Some people actually do faint while moving their body from the laying down or sitting position to standing upright.The diagnosis for POTS is usually made when a heart rate increases approximately 30 beats per minute (bpm) a few minutes after standing. Some people with severe cases of POTS, might need to get a pacemaker. There also may be other heart problems going on besides the Dysautonomia/POTS; as in my case.  *”Many times POTS shows up in women who appear to be “normal and healthy” on the outside. Researchers have found that these issues and symptoms are actually as disabling as such conditions as COPD and CHF” (*this information was found on “Dysautonomia International” website). Another common diagnosis for persons with ANS dysfunction or failure is “Arnold Chiari Malformation”.  This is something that a person is born with but it usually goes unnoticed until they have symptoms and then an MRI. It happens when the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. In my case I’m unable to hold my head up for a very long period of time because it feels weak and painful. “Chiari” can cause a number of disturbing issues for those who live with it. Some of these are: migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.

There are many “faces” to Dysautonomia, with its different symptoms and illnesses.  I’ve mentioned some of them, but there is so much more to this “Invisible Illness”.  For example; there are a number of other health issues associated with it and people don’t realize that some of these are linked together.  Some of these are:   CRPS or Complex Regional Pain Syndrome, Gastroparesis, Ehler Danlos Syndrome (EDS), CFS/ME and more.  Many times patients feel like they are just living with many different ailments.  Some physicians think that their patients with all of these different “issues” are just complicated. They don’t always look at how all of these ailments could be the many pieces one “puzzle”  that all fit together  because they are all under this “umbrella” of Dysautonomia.

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System (*numbers from “Dysautonomia International” website. Please try and remember these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr. has approved it! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  I’d rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of the statistics or medical information was taken from the “*Dysautonomia International” website at WWW.Dysautonomia.org. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day.

SIBO, The Missing Piece of Chronic Pain Dysautonomia


 

Difficult question

One Summer day in 2002, a man ran through a red light and changed my life forever. I didn’t know what pain was until then, except for childbirth. After the MVA, I went through multiple surgeries, chronic intractable pain and then one medical issue/diagnosis after another. I now have an Autoimmune disease called “Combined Immune Deficiency”, which renders me unable to be a candidate for many surgical pain interventions.  I have several pain illnesses such as:  Systemic/full Body RSD/CRPS, Arnold Chiari I, Polyneuropathy in Collagen Vascular Disease (which is similar to EDS type 4/Vascular), Degenerative Disc Disease, Autonomic Neuropathy, Scoliosis, Rheumatoid Arthritis,Dysautonomia/POTS, CFS, Gastroparesis, Chronic kidney disease II, Chronic Erosive Gastritis, and there are more. I won’t bore you with the rest of the list because you get the idea!  Except for the latest diagnosis that I’ve been given, puts the puzzle together for me in some ways.

Are you a chronic pain patient who has had IBS (Irritable Bowel syndrome) and much trouble with your stomach and digestion? Have  you been diagnosed with Chronic fatigue? Do you have Fibromyalgia? How about Dysautonomia, POTS and EDS?  Well, it took me several Gastroenterologist’s to actually find one that would truly listen to me. One who had knowledge of such things as CRPS and Dysautonomia and ANS failure. We all need to visit specialist after specialist, until finding one who truly listens. Luckily, the GI Dr.that I’ve found, is knowledgeable about CRPS and many of the pain illnesses that I have. He did many blood tests, EGD, colonoscopy and gastric emptying test. He gave me the diagnosis of chronic erosive Gastritis. He said “Do you see the CRPS lesions on your hands and legs/feet? That is what the inside of your stomach looks like”. Then in giving me the diagnosis of  Gastroparesis he explained  how my  Dysautonomia most likely contributed to many things, including the next illness that I would be diagnosed with. I finally had answers and was so relieved to at least know what was going on inside of my body. But that was only part of the puzzle.

Next, he ordered a test for me, called a “SIBO” or “Small Intestinal bacterial overgrowth” test. In the end, it shows if you have a chronic small intestinal bacterial infection or not. Most people have this test and it can last up to 3 hours. Mine was positive after only 20 minutes, because the numbers tripled during that time! I was given a positive diagnosis for “SIBO”, and then a couple of medications; including an antibiotic. They printed out an information sheet and made me a  return visit appointment with the Dr. in a few weeks.

I actually rushed to my keyboards in order to share this information with my “pain friends” and the “pain community”. This is an important piece of the “puzzle” for many, I believe.  I will try to explain this in the best way I know how, but you need to talk to your physician about it,  in case it could be part of your puzzle.  You see, we all have the “normal” bacteria in our GI tract. The small intestine not only plays an important role in digestion and getting the nutrients from our food, but it also plays a very big role in our immune system and fighting infections. The “good” bacteria help with absorbing vitamins and nutrients such as Vitamin K, A and folate. They even help with the muscles that move food through our systems.

SIBO is essentially a chronic infection of the small intestine.  They have found it shows up positive with many chronic conditions. It can lead to various IBS symptoms such as: bloating, abdominal pain/discomfort, Diarrhea, Constipation, Gas/belching and in more severe cases there can be weight loss and the symptoms related to the vitamin deficiencies. One of the biggest issues it causes is called “leaky gut”. But it can “mess with” our immune system as well. This in turn, may cause an increase in allergies, food sensitivities, fatigue, altered cognition or “brain fog”, pain and other neurological symptoms. SIBO is a bacterial infection but it is NOT contagious. It is very hard to treat because antibiotics are used, but in about half of all patients it returns within a year, maybe several times. Extended use of antibiotics is a risk factor for SIBO! It has been studied and most patients with Dysautonomia also suffer from SIBO! There are several publications out now, that find a strong connection between SIBO and Fibromyalgia as well.

So why am I telling you this?  Mostly, because many people who have CRPS, EDS, FMS, CFS and other pain illnesses or ones which cause fatigue, also have Dysautonomia. Abnormal autonomic function can cause many varying symptoms, including:  fatigue (*not just being tired, but a lack of energy so severe that has a huge impact on a patient’s life), sleep disturbances, altered cognitive function (*known also as brain fog), cold/heat intolerance, headaches (*headache upon waking up are common with ANS dysfunction), bladder/bowel dysfunction and stomach pain (*GI symptoms such as: bloating, early fullness are a part of ANS dysfunction as well). Digestion is a large part of the Autonomic nervous system. In addition, many people with EDS Hypertonicity/Spasticity or abnormal muscle tone have Dysautonomia; along with POTS (Postural Orthostatic Tachycardia Syndrome), Visual disturbances and altered sweating.

Treating this small intestinal bacterial infection (SIBO) is very challenging. Treatment is more than just helping with IBS symptoms.  SIBO, as I have discussed, is often present with many of the autoimmune or chronic inflammatory diseases. Getting rid of the “wrong” bacteria is most important. I was given an antibiotic and probiotics. But some patients, I’ve read, are given antimicobials, and pro kinetic agents such as low dose Naltrexone.

If you have any of the symptoms of SIBO that I’ve mentioned above, talk with your GP or see a Gastroenterologist, a specialist in digestion and motility disorders. For more information you can visit: https://autonomicspecialists.com/symptoms/, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/, http://www.thedysautonomiaproject.org/‎, https://draxe.com/sibo-symptoms/, http://www.mitoaction.org/files/Dysautonomia.pdf, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/

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I want to add that SIBO is just another painful part of  living with Chronic Pain illnesses. The diagnosis of Combined Immune Deficiency disease,  makes me one of those persons who needs access to Opioid pain medications. Due to risk of infections and an even higher risk of paralysis; I’m one of many pain patients  who are not candidates for SCS or a pain pump. We need to be heard and to keep our voices going strong. Continue to reach out to our Government representatives, regarding the error in  labeling us as “addicts”.  A grossly incorrect label given to those of us living with chronic daily pain but who require Opioid pain medications. The majority of Chronic Pain patients take these medicines responsibly. We should not be lumped together with Heroin addicts and those persons who abuse drugs. I/We do NOT get a high, nor do I/we crave our pain medications. We require them just as a diabetic needs insulin. In my own life, the Opioids help my CRPS, the horrible burning nerve pain & give me a reprieve. In the same way that other medicines help people with different specific illnesses. If the diabetic or the person with high blood pressure stops their medications quickly, they will get very sick and could even die. Why can’t the CDC, DEA, PROP Dr.’s and our Government see this?  That I too, can digress, get very ill and even could have seizures or a heart attack if I am abruptly removed from my Opioid pain medications? The exact pain medications that I have been prescribed and have been taking  at the same or lowered dosage since that auto accident in 2002.

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