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

We are Not Addicts! Get it Through Your Heads!


The Head of CDC says “this is personal “

Read this article and then read my comments here afterwards- please. This is outrageous!

When will they get an unbiased person to take over this “so-called” crisis? An adult, teen or child who willingly takes cocaine or heroin, laced with the bad cara-fentanyl or any fentanyl is wrong for making the choice to do so! This is 100% totally separate from a chronic intractable pain patient getting a prescription from a legitimate pain physician. It’s different because it’s not just a choice, it’s necessary & something many chronic pain patients need to even have some semblance of a life!

If this is such a “personal” matter, then keep it that way! It’s “personal” and those affected by illegal drug use should get the help THEY need; without killing all of the chronic intractable pain patients in the meantime! If we don’t die or commit suicide from living an agonizing “1/2-life” of horrible daily pain, then we are just living a tortured existence of pain combined with fear. Innocent chronic pain patients are also being made to feel like criminals! This is insane!! Please, legislators and others in positions of power over the chronic pain population of this country, take the “personal business “ out of the workplace! Put yourself in the position of knowing that any day you could be hit by a guy who runs a red light, as in my situation! Any one of you or your loved ones could be living with unbearable pain from any number of accidents or illnesses that come up each day! If it was “personal” chronic intractable pain, I’ll bet we’d be getting a different story & a different swing on things!!!

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

Turn Your Fear Into Action



Yes, it’s a sad day when the U.S. government starts messing with the Dr. and patient relationship. Our legislators are not trained in the management of chronic illnesses nor in the management of chronic pain. This is also true for the pharmacy chains. Since when does a “drug store” get to tell a legitimate M.D. that they won’t follow their instructions? The chief medical officer at CVS health says “We have some situations, in which we feel that there are certain physicians who are prescribing way too high of doses and way too strong of medications,” he said. They are now beginning to limit prespcription opioids. But they don’t have a Dr./patient privilege. They do not know what is wrong with each patient in any given situation, due to that privilege. So I just don’t understand how they are the ones to control this situation? In my opinion, this is for publicity due to what is happening right now with all of the hype of the so called opioid crisis. There are legitimate avenues for the pharmacy chain to report certain specific physicians about whom they are concerns. There seems to be no reason to punish the entire medical profession and pain community for the sins of a few.
 The CVS policy is going above and beyond the “VOLUNTARY” recommendations of the CDC guidelines. These guidelines were given and intended to be only advice for Primary care physicians who treat chronic pain patients. This is even taking the patient care out of the hands of the trained pain management physicians, in my opinion. In an article in Today, by Charles Shamard M.D., on September 22, 2017, it states that CVS plans to roll out the initiatives to control opioid abuse as of February 1, 2018.

“Daily dosage limits will be based on the strength of the painkiller and CVS pharmacists will require the use of immediate-release formulations of opioids before extended-release opioids are dispensed, lowering the risk of tolerance to the highly addictive drugs”.
Stop and take a deep breath, just for a moment. Think about this logically and clearly for a moment and make sure that you read everything you can get your hands on before you become terribly upset. I totally and 100% understand why the chronic pain patients and many physicians in the communities are upset. The government and pharmacies should not be controlling or meddling in these kinds of situations. But if you look closely and think very clearly, this is for new prescriptions. Also, if. You have ever had surgery, the first 7 days are the worst, right? If you need more, then the Dr. may possibly be able to write another one for another 7 days? But in opioid naive persons, a 7 day supply may be alright following a minor surgery? I feel that the surgeon would be the one to know for how long his patient should need to take stronger pain medications. Just try to remember that most of the new guidelines are not for legacy chronic pain patients, who have been doing well on opioids for several years and on steady doses. 
This is the time to not over react and not just complain. This is the time to put on your “thinking cap” and get to work. Find out who your legislators are and send them an email. It’s super easy to do. You just google your state and add “.gov” after the name of your state. A list will appear and you can choose who to write to. Go to the link that says “contact” and send them each an email. You can do it from your bed or your sofa and from inside of your own home. You don’t have to go anyplace or use up much energy. Write something kind and to the point. Most of them do not know the difference between addiction and dependency. They are just going along with the mainstream media hype concerning opioids. You may find that their hearts are in the right place but they just haven’t received any positive information regarding how helpful the opioids can be to some persons with long term chronic pain and chronic pain illnesses. They may not know about how the suicide rate has been rising since all of these restrictions have been put into place. According to Dr. Stefan Kertez, M.D., “A significant number of chronic pain patients are killing themselves, and that should be a concern to a society at large when people die as a result of something done to care for them.” These CDC guidelines are not a law. They are “guidelines” and mostly for Primary Care physicians and not legitimate Pain Management Physicians. But most certainly, I just cannot imagine that they were meant for pharmacy chains. 

Comment:  A friend of mine, named Bob Schubring, wanted to write these comments but WordPress isn’t working properly & it won’t allow People to leave a comment? I don’t understand what’s wrong but I did want his comments to be seen: here are the comments from Bob Schubring :  

Hi Suzanne:

Patients need to form a union.

Individually, we are powerless against corporations, politicians, bureaucrats, and demagogues. If we organize, we can get a lot more done.

A starting point for a National Patients Union, is to create one of the new Association Health Plans (AHPs) that are about to become legalized by an executive order, that will allow people to shop for health insurance sold in another US state, than the state they live in. If we patients unionize ourselves, we could create an AHP and buy healthcare at the best available rate, bargaining collectively with the insurance corporations to get that rate. Our union could bring great pressure on a corporation like CVS, because we could offer them an alternative solution to their governmental problems, than the cowardly solution they are now pursuing.

CVS’ cowardly fear, is that they will be sued for malpractice, whenever a liar checks into a rehab clinic for addiction treatment, then comes out seeking money, and sues CVS for “enabling” his addiction. And CVS’ cowardly solution, is to form an alliance with an enabler of al that lying, addiction “expert” Andrew Kolodny, and attack pain patients and everyone else who is not an addict.

What a National Patients Union could do, is offer the competing drugstore chains the exclusive right to fill our prescriptions. As a union, we could simply agree not to make lies up about the causes of addiction nor to use those lies to win money we don’t deserve, in court. That would give the competing drugstore chain that wins our business, the same protection that cowardly CVS wants to get from liars and cheats, by attacking the rest of their customers

________

That’s my comment.
Hope you are having a low-pain day today.

Bob Schubring

We ARE In The Room



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

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

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

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

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

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

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

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

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

Excerpts taken from DetroitNews.com

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

Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain & RSD/CRPS.  I’m also a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


Dear Editor 


Dear Editor,

Do you remember the last time that you fell & you were bruised? Do you remember how badly it hurt, how distracting it was, how you couldn’t get your mind off of the pain? But after awhile you were feeling better and you were glad that the pain went away. You could get on with your life. 

Now imagine if that pain, but worse, never went away. 

That’s what it’s like to live with chronic pain. I have lived with chronic pain since 2002, after a man ran through a red light and “T-boned” our car. I’m not alone, because 100 million Americans live with chronic daily pain. That’s more than the number of Americans living with heart disease, diabetes and cancer combined. In terms of impact, chronic pain is the leading cause of long term disability and its cost (including lost productivity and treatment expenses) is higher than $635 billion annually. 

Pain has affected every aspect of my and my family’s life. I’ve not been able to work, and a large part of our expenses goes towards my healthcare. Also, the number of office visits has now doubled because of these new CDC guidelines. That means double co-pays, double the amount of time driving and having my husband leave work to take me to the Dr. appointments. My husband is retiring and instead of taking it easy, he takes care of all the household responsibilities. Therefore, I miss out in spending that time with him. I also cannot do the things that I used to love, like going shopping with my friends. Going out to lunch with the girls, and going for long walks. I’ll most likely never be able to actually walk on a beach while being barefoot in the sand.

Despite the prevalence and consequence of chronic pain, people with pain are very much overlooked and under treated. People who live with daily chronic pain are often labeled as “lazy” or over dramatic and not taken seriously. Very few treatments such as physical therapy and even most durable medical equipment are not fully covered by insurance. As of today, less than 1% of the National Institute of Health’s budget goes towards pain research.

It’s no surprise that those living with daily pain are suffering-and not just physically. In one survey, more than half of the respondents felt that they had little or no control over their pain and more than ¾ reported feeling depressed. In fact, research has shown that Chronic Pain patients are twice as likely to commit suicide as the average person. Many chronic pain patients feel alone with their pain and they become cut-off from society and friendships that they once cherished. I can speak from experience when discussing the feelings of aloneness. You can have loving people in your immediate household, but still feel alone with the pain. I speak of this from experience because I was feeling isolated and as though no one was listening to my pleas. That was until I got connected to and started volunteering for the U.S. Pain Foundation.

People with pain, like me deserve better. My family deserves better. Imagine if we took that $635 billion in lost productivity and health care costs and invested it in preventative care, new treatments, research and emotional support for pain patients? In honor of September as Pain Awareness Month, I encourage all Michiganders to join me in advocating for positive change for the pain community. Our Governor, Rick Snyder and the Supervisor of Canton Twp. Michigan have joined me in helping to raise awareness this month. They’ve each signed a Proclamation & a Resolution proclaiming that in Canton Twp.and in all of our great state of Michigan, they are recognizing September as “Pain Awareness Month” for 2017! To learn more or to become involved, visit: http://www.uspainawarenessmonth.org ,

Sincerely,

Suzanne Stewart 

Canton, MI