Down The Rabbit hole


alice1alice3

I want to inform the pain community about my situation because this is happening to many chronic pain patients. I’ve been a voice in the pain community and now I too, am going “down the rabbit hole”! Before I become possibly incapacitated; I want you to know what is happening. For those like Kolodny, who believe that we should “get beyond the pill bottle”; I say, unless or until you are in my shoes and live with my experiences, stop preaching silly things like “pain acceptance”, will help. It cannot help all of my pain conditions combined. Stop acting like you are better, mightier or stronger because you might feel better from “grounding” (which is in essence, touching the earth with your feet, being “one with the ground/nature”, to make your pain lessen or disappear). The bottom of my feet are covered with open sores due to the stage of CRPS that I live with. This has become insane, while there are individual cases in where opioids are the preferred treatment and they do continue to reduce our pain.

*A bit of history if you want it: I won’t start at the very beginning because that would be much too long. I will tell you that I’ve been on SSDI since 1999 and initially for PTSD (*they said that I was the “worst case of childhood trauma/abuse they’d seen in 36 years) and kidney failure. Then I was hit by a car that ran through a red light. One minute my husband & I were sipping lemonade at an art fair.  The next minute, (as we travelled through a green light to have dinner afterwards) he was really bruised & shaken and I was unconscious & strapped to a back board, on route to the hospital. That experience is a story for another day. The entire auto insurance bullying and fear mongering was another traumatic debacle. These experiences have continued, one after another; which brings me to today and this article. 

After our accident in 2002 and upon being discharged from the hospital; I was sent to doctor after doctor. I was also sent to TBI rehabilitation, PT/OT and also to Tri-County pain clinic in MI. I was totally new at all of this & it was my first experience with this type of physical pain. Although, I have had 2 C-sections and I’ve lived through childhood, ex-spousal & other abuse throughout my entire life. At the pain clinic, I received various epidural nerve blocks, trigger point, cortisone and other injections. I also saw a Pain Psychologist, did Biofeedback and did many other types of therapies. The Pain Psychologist wrote in his report, by the way, that I “do not fit the profile for an addictive personality.” He attached me to an EMG type of machine where he can “see” your pain spiking via a red line going upward. Mine went off the charts. This was prior to my diagnosis’ of: systemic CRPS, EDS-4/vascular (aka Polyneuropathy in Collagen Vascular Disease), R.A., Dysatuonomia/POTs, Gastroparesis, S.I.B.O., Chiari and more. At that time though, I was diagnosed after the auto accident with: many physical injuries and a TBI. I went through 8 surgeries, 2 screws in my left shoulder, metal in my jaw, 2 AFO’s, prisms in my glasses, 2 hearing aids, a dual chamber pacemaker and a hospital bed in my home. I have a walker, loft-strand crutches, wheelchair, motorized scooter, leg braces and also knee, neck, hand and shoulder type of braces.

After going through all of the “hoops” at the pain clinic, I was found not to be a candidate for an SCS (spinal cord stimulator) nor a pain pump (intrathecal). I was diagnosed with CVID or “Combined Immune Deficiency” disease. They informed me that I would be sent back to my primary dr. because they could not give me the medication that I needed. In 2005, they were already saying that they could not prescribe pain medications (which they felt I needed) because they had to “stay under the radar of the DEA”. I went back to my PCP and for the next 10 years he prescribed pain medications.  Until one day in December of 2014, I arrived at my PCP’s office and was told that it was his last day working there. I received no other information and I was terrified because I did not know where to go or what to do. Dr. Bullach MD; promised me that he would personally make a call to my former pain clinic and Dr. Dobritt, my former pain physician. He also promised me that my treatment would remain the same under his partner. I returned the next month to see his partner and was condescended to, teased, put down, and told that “all of the other dr’s patients were “drug addicts”, “drug seekers” and unworthy people seeking pain medications. He promised to see me for a couple of months because he had known me “to be a good person” since my children were small. But over the next 6 months I had to put up with derogatory remarks.

Dr Bullach never did call Dr Dobritt, nor did he send any of my updated records. I found that out when I went to see him myself again. I had been a model patient; and the way I was treated when I went back to see him was horrible. He would not take me back as his patient! He told me that’ “he couldn’t see me because I was part of “Dr Bullach’s mess”! I had no idea what he was talking about!

I sought out a pain physician and found one near my home. He told me that if I could take myself off of the medication that had been prescribed to me since 2005, that he would “accept me as his patient”.  I was very ill for about 11 days and for up to 6 months, I was not feeling well aside from the pain issues. But I got through it and would not ever want my worst enemy to go through that experience. I did it with my loving husband by my side because I was not addicted to it. My mind did not care at all, but my body was dependent. When that ordeal was over, I saw my current pain dr; the one I still see today. Things had been going well and I have had some semblance of a life. He had told me that I was a “complicated patient” and that I did not have to worry about my medication being stopped.

For several days prior to these appointments, I became very apprehensive, nervous and had many of the PTSD symptoms recurring monthly. Then his attitude towards me changed from a mutual respect to him being the “Wizard with a magic wand” and Me being a peasant “needing his magic”. Thats the only metaphor I can come up with. It was bazaar. I had a routine urine drug screen test in April 2018 and he knew before I left his office that something was not “right” with it, but he failed to inform me prior to leaving. At my next appointment he informed me that I had had a positive urine test and so he sent it into a lab for more testing. It came back as a “false positive” because of the migraine medication that HE KNEW WAS PRESCRIBED to me for many years. I take very little, but he knew it was in my records; he knows that I take it.  In the end, we got stuck with a $265.00 bill for testing that I did not agree to pay for. We got stuck with this large bill for something that I did not do and would never have done. It was his mistake, not mine that he forgot the medications that I am taking and that it can show up as something else, as he explained later.

He has had an “edge” to his treatment of me since that date. I am literally ill prior to each monthly appointment. Nothing changes in 30 days anyways? Why in the world do we need to go so often? This is ridiculous.  Just as a person with diplopia or myopia needs glasses; just as a diabetic needs insulin and a depressed person needs anti-depressants; I am a chronic intractable pain patient and I need pain medications.  I’ve never done anything wrong as far as I always pick up my meds on time, I’m never late for my appointments and I’ve never been a “no-show”. But I showed up on July 9th, 2018; and was suddenly without explanation, cut down to 75% of my LA/ER pain medication. He was going to stop it abruptly that day, but I did not get hysterical. I reasoned with him, adult to adult. I reminded him of my prior heart attack, the CVA (stroke) and my complicated medical history with multiple co-morbidities. He agreed reluctantly to taper me a bit. He informed me that he was doing this to get me “psychologically ready” and that next month I would get zero.  I’m not “Psychologically addicted” so that made no sense at all, but I went with it for my own comfort and safety.  He went on to tell me that suddenly the patch is  now “only for cancer patients”, which he does not treat. He also told me that I was “not heavy enough” for the patch and “I was probably only really getting 30% of the medication”. I did not say a word as I was prescribed down from 100 mcg per hour, every 48 hours (due to hyper metabolizing), to 75 mcg every 72 hours. So not only 25% less medication, but now being stretched out a full 24 hours longer each patch. The first few days were difficult as I had a few withdrawal symptoms. But the rest of the month, I’ve had increased pain, exacerbation of my CRPS, and fatigue. Also, every 3rd day I was in bed, very ill. We all know that for especially those of us who hyper-metabolize (due to the types of pain illnesses that we have), the patch never works on the 3rd day!

I have a loving, supportive husband and my support “team” online which consists of a few people who have been there for me throughout this ordeal. I had websites, stories and ideas sent, all in an effort to help me reason with my pain dr. On 8-10-18, I showed up well prepared.  I had with me, the 2013 FDA’s response to Andrew Kolodny, when he wanted Fentanyl labelling changed for non-cancer pain. They told him this, in their 2013 letter (Docket No. FDA-2012-P-0818):  “It is FDA’s view that a patient without cancer, like a patient with cancer, may suffer from chronic pain, and PROP has not provided scientific support for why labeling should recommend different treatment for such patients.  In addition, FDA knows of no physiological or pharmacological basis upon which to differentiate the treatment of chronic pain in a cancer setting or patient from the treatment of chronic pain in the absence of cancer, and comments to the Petition docket reflect similar concerns.  FDA therefore declines to make a distinction between cancer and non-cancer chronic pain in opioid labeling”. My dr responded that “this was not about Fentanyl” and that I am educated and should be able to find out about this?

Next, I brought to his attention, a letter that I received a copy of, from a good friend of mine on LinkedIn. He had written to the CDC and asked about the horrific state of affairs within the chronic pain community. We covered his name and I showed this to my dr as well. This letter, which is directly from the CDC and dated 4-8-18, states these things:

  • chronic pain patients deserve safe and effective pain management
  • physicians should continue to use their clinical judgment and base their treatment on what they know about their patients. That includes the use of opioids if they are determined to be the best course of treatment. The Guideline does not support involuntary tapering.
  • Obtaining patient buy-in before tapering is critical to successful dose reduction.
  • The Guideline is not a rule, regulation , or law.
  • The Guideline is not intended to deny access to opioid pain medication as an option for. pain management.
  • The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain.
  • The Guidelines are not intended to take away physician discretion and decision-making.
  • Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy.

In the end, none of the information that I presented, made any difference to my pain dr.. He just kept repeating “the guidelines, the guidelines, the guidelines”. He told me that in all reality, I was not worth saving, because if I look at his waiting room, he has all of those other people to serve, who also live with pain. If he helps me, he risks losing his practice and then he would not be able to help all of them. He informed me that “everyone is looking at him the same way” and they are also “pleading with him” for their medications.  I told him that he’s told me that I am “different” and that I am a “very complicated case with multiple co-morbidities”.  I told him that I researched Michigan Law and that there are no changes in the care or plans for chronic pain, only acute pain. None of this mattered because he just looked at me, after I showed him the letter from my G.I. dr.. A letter written by him on my behalf, states that “Suzanne has been stable while she received the fentanyl patch”. It goes on to say that I have “RSD and severe Gastroparesis and this could “exacerbate the illness of a patient who was difficult to stabilize” due to Q-T prolongation, her allergies and intolerance for oral medications”. He said that “he strongly recommends that my pain management not be altered unless there is a strong medical reason.”

My pain dr looked at me and said “This is bullshit! His license is not any better than mine! If he wants you to have the fentanyl patch then let him prescribe it for you. You’re also welcome to find another dr and get a 2nd opinion. I won’t be upset if you do that, although Im not kicking you out or anything.” He repeated that “the CDC guidelines are specific for fentanyl” and there was no way in hell I was ever getting that from him ever again, an neither is anyone else; no matter what! He pretty much told me if there was an exception, I would be it, but there are no exceptions. He repeated to me that I am educated, and have access to the internet. If I do my research, I will know that what he’s saying is true. I have done a ton of research and I know that what he’s saying is not true. He is violating his Hippocratic oath “to do no harm”. Many other physicians are also doing this instead of defending the fragile people who need them during this opioid hysteria

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

Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

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

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

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

Invisible Disabilities Week 10-15 Through 10-21-2017, You Are “Invisible No More”


IMG_2043.JPG

Several years ago I was approached by a YouTube channel called “Invisible No More TV”. They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”.  They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more’.  I agreed and I’ve been featured on that channel ever since 2012.  I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”.  The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”.  I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.

First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabili.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.  Unfortunatley the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgements.”  The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed.  One week during the year, the third week of October is the time to share your journey with invisible disabilities.  This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”.  During this wek, we will be posing many interactive posts on Facebook, Instagram and Twitter.  These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share. This is YOUR week to meet new friends, post a video or share  stories with others.  The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.

This is how this week will play out:  On Monday we want you to “share your story”.  You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best). Please note that you can post your story throughout the week, but Monday is the starting date for this activity.  On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life. You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes. If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at:  www.InvisibleDisabilities.org).  If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities.  IDA is on  Instagram at: http://www.Instagram.com/invisibledisabilities, on Twitter at: http://www.twitter.com/InvDisabilities and on Facebook at:  www.Facebook.com/InvisibleDisabilities. You can use the tag #InvisibleDisabilitiesWeek.

Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”.  They believe that “together we can make a difference in our communities and around the world.”

But now I just want to tell you a little bit about my friend Sherri Connell was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed.  At first friends and family were understanding and supportive.  She has been able to regain some use of her legs with a lot of work and effort. She still finds it difficult to stand and walk around.  But because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding. It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too.  She could not care for her own daily needs.

Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness.  He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”.  Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world.  These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.

So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mision to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the  Globe”!  If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above.  Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.

IMG_1226

 

 

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


From Mini Van to Wheelchair In 10 Seconds!


download-stopthepain         img_8439

I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”.  My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”!  She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.

I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2.  We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do  a lot of outings and I just am not able to babysit alone, without my husband there.  I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident.  My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline.  I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!

So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed.  My pain Dr. is much better now and the regimen that I’m on is safer.  But I’m unable to do the activities that I wish to do with them.  If I was the person that I had been, I would be making snow angels with them in the snow.  I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together.  I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.

Time has changed me and now I am tired and in pain much faster;  more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”.  It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery.  I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all.  I want to spend a whole day at the zoo with my granddaughters.  I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning.  Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference.  Things that I wish I could do, I no longer am able to do.  I love and look forward to babysitting when my husband is home and he is with me.  He is there so that when I start to be too tired and in too much pain, he takes over.

But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident.  My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself.  I couldn’t even go to the rest room without help.  My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad.  When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family.  I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead.  I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.

05f5fe5e1d0b80196303616612b7e84d

What Is A Chiari Migraine?


Arnold Chiari Malformation is definitely a tongue twister. The other name that it goes by, is “Syringomyelia”, and that’s not any easier. It is also something that I was likely born with. Sometimes type I or II are an intra-uterine abnormality in which the tonsils of the brain become herniated and the “foramen magnum is enlarged. The defect that happens during fetal development can be genetic or lack of proper vitamins/nutrients in the maternal diet.
CM occurs in as many as 1 in every 1,000 births. That number is even a little higher now, due to technology and more MRI’s that are being done. In many cases it is “sleeping” and the person doesn’t know that they have it. Sometimes here are no symptoms until adulthood and other people usually just go along with their life in a normal fashion with no problems at all. Although if you were in an auto accident or have had extreme whiplash; these things can “awaken” the Chiari Malformation. Babies that are born with it, may have trouble feeding, swallowing and gaining weight. There are four different kinds of Chiari, but type I and II are seen most often. The other types are diagnosed when an infant is born normally, because they are so much more serious. Type I is the one that I live with and it’s the more mild form. Type I sometimes never causes any symptoms unless or until a person is either injured or reaches adulthood. 

In 1983, I was struck from behind by a drunk driver, while stopped at a red light. I suffered a forceful whiplash and had many headaches after that injury. I was a person who hadn’t complained of headaches prior to that whiplash. Later, in 2002, my husband and I were driving and a man ran through a red light. Our car was totaled; and I suffered a TBI, a forceful whiplash and multiple injuries followed by many surgeries.

In all of the Chiari’s there are changes or malformations with the “tonsils of the brain” and where the neck and spinal cord meet. Any kind of injuries to the head and/or neck can bring about symptoms of Chiari I malformation. The part of the brain called the “tonsils” or “hindbrain” can become swollen and then they don’t fit well into the spinal cord. In my case, this causes what is called “Chiari Migraines”. What also happens sometimes is that the Cerebellum, which is the “balance center” of the brain, pushes itself into the spinal cord and this “pushing” of the cerebellum can cause headaches and other neck pain and compression to nerves. The problems come when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

The kind of headaches that occur from Chiari are various and may be only sometimes “on/off” or they can be often and persistent. My pain is in the back of my lower head and top of my neck. Others have pain anywhere from the forehead, the neck and/or the back of head. The pain from CM can become worse when you move your neck too much by way of coughing or straining. I am unable to hold my head up for long periods of time without terrible pain and weakness.

In some cases, with this medical issue, there may be other problems that are found. In conjunction with the head/neck pain and weakness; a patient may have a lack of coordination, a hard time swallowing, Nystagmus or Impaired eye movements, sensory sensitivities and other issues. Arnold Chiari Malformation can only be diagnosed by an MRI to the brain and spinal cord. A CT scan cannot see it and therefore is not used as a diagnostic test for Chiari.

If the Malformation to the “tonsils” of the brain is severe, or if the pain is very intense and debilitating; surgery is needed to relieve some of the pressure and relieve the symptoms.

If you have Chairi I and you don’t need surgery, then treatment is usually just to relieve symptoms as they occur. Physicians like to keep the pressure under control and they use medications for that. Genetics testing has been researched and they have found that in some families there is genetic factor present. Researchers are still continuing to search for the genes that cause this Chiari Malformation.