Nowhere To Run



Going to the doctors office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5 year old deep down inside, more afraid of doctors than ever before. Why do they have so much power over us? Why do some use that power to make us feel inferior? Eleanor Roosevelt said “No one can makes us feel inferior without our consent”, but I feel it and I don’t remember giving anyone permission? We are living in difficult times for anyone who has debilitating, intractable chronic pain. There also is no place to “run”, no matter how big your suitcase is or how much money you have. There’s no grandparents at the other end to scoop you up and tell you that “it’s going to be OK”. Mostly, because it’s NOT OK.
Have you ever seen an action/crime movie where an innocent person was being tortured and/or thrown in jail, for something they did not do? A person being “beat up” but totally innocent? This is what is happening to the chronic pain patients in America today. I’m going to share a short story about what happened to me the other day. We always think these things only happen to “other people”. That “it won’t happen to us”. That is wrong and untrue. We live in a civilized nation, or do we? How can they treat us like this?
Here is a summary of what happens to me every 30 days. Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my upcoming appointment, I get more frequent stomach aches. I want to stay inside more and just sit in my “Lazy Boy” chair, with my blanket and with my cat cuddled up next to me. I wonder if “this will be the visit that “it” happens to me”? As the appointment time gets closer, I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. Then the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house. I cannot leave because no matter how much I talk myself out of these feelings, they won’t go away. My blood pressure, which has normally been low to normal, is very high for me at about 150/95 to 155/100. I feel sick and afraid. But I’ve never smoked anything and I have never taken any kind of medication or “drug” that was not specifically prescribed to me by a licensed physician.
The time of the appointment grows closer and I get even more distressed. Sometimes I cry and I just verbalize to my husband that “I don’t want to go”. I wonder why is life so cruel to those who are already living with agonizing pain and illness? I’m not one to feel sorry for myself. I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. He has no reason to believe anyone and he must go by what he sees in text. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.
It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30 minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”. We arrive at the pain Dr.s office. There are cameras everywhere, in the parking lot and in the office. For all I know, theres one in the restroom? I know that I left a urine sample last time, so I feel pretty calm about that not going wrong. I had not heard from them, so Im just sure that there’s no “false positives” with me. That only happens to other people, right?
We sign in at the front desk. I answer the several questions that I am asked every 30 days now. For crying out loud, what changes in 30 days? It’s just too often to put people through this, aside from the cost. My name is called and my stomach is in knots. I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”. I hear the footsteps faintly coming down the hallway and then a knock at the door. I calm my inner fears and I tell myself “Suzanne you are a good person. You’ve never done anything wrong and you follow the directions exactly. This is crazy, why are you so afraid?” I’m afraid because of the horror stories of others who are also innocent. The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue. But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab. In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.” I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had ben positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guiilty”. It doesn’t matter that these tests are many times false positives and false negatives. Nothing matters anymore. The truth doesn’t matter any longer. I was literally terrified just hearing those words come out of his mouth. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.
We had received a $265.00 bill from a lab just a few days prior. We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it? Next time there is a “false positive”,they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever? It was explained to me that no matter who I am, how exemplary of a patient I might be and no matter how long I’ve been going there with a perfect “record”. I will be treated as if it were my first visit and there are no second chances. We are perceived as “guilty, bad and lying” if the tests says it is so. Yes, there is a second test, but then you are hit with this grossly overblown bill and there’s no way to pay for it. The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means every once in awhile there can be a glitch or a mistake. That means that every once in awhile someone gets hit with this huge bill, through no fault of their own.
I am tired of people telling me that I should not be on this medication. People who are supposed to love me or at least care about me. It feels like nobody understands the predicament we are in. I take medicine that still helps to relieve my pain even though I’ve been on it for quite awhile. I have almost no side effects and I’ve tried many many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. I get the pleasure of being a grandmother. Without it, I would be in bed or in my chair 24/7. I’ve been there and done that. I don’t want to go back. I’m tired of being judged by people who don’t know me. I don’t get a “high”, and I never take more than prescribed. Why can’t I just continue to do what has worked for me? Why can’t we all? Why do we have to feel persecuted and judged? Why do we need to feel traumatized and terrorized every 30 days, to the point of feeling physically ill?
My story up to this point, ended on a positive note. My Dr. still had to send out the first test because he said that “it is the law”. I have never done anything remotely considered to be “bad” or “wrong” and definitely not “illegal”. I’m a good person who graduated college with honors. I raised my daughters mainly by myself for about 8 or 9 years. I worked full time and took care of everything and everyone who needed me. I try to be kind, thoughtful and I am always trying to think of new ways to help others. Nobody deserves to feel this way. Theres something definitely wrong with this and someone needs to fix it.

Opioids, Cannabis And Complimentary Therapies


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

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

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

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

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

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

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

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

Becoming Incurable Crowdfunding Campaign


Please watch this short video and see how this film producer is bringing awareness of Chronic pain and Chronic illnesses to the big screen!

If you prefer to visit my advocacy YouTube Channel to watch this, you can visit: WWW.YouTube.Com/Suzydukettes….

BUT my newest Youtube video is right here for you to watch -and it’s only about 4 minutes Long: I hope you will enjoy, learn & help in any way possible with the crowdfunding campaign, at: http://www.seedandspark.com/fund/becomingincurable

Here is a very short 4 minute video: (Thank you for Watching):

Becoming Incurable Crowdfunding Video

A “Call To Action”


I saw a “call to action” from my US Pain Foundation family in January, about the upcoming “Rare Disease Day”, on 2-28-18. I went to Rarediseaseday.org to check it out. There was so much information and 2 of my illnesses (CRPS & EDS -4/Vascular) we’re on the list! I downloaded the social media packet and started sharing in each of my groups & on all of my pages, Blog etc. I wrote to the event facilitators and they posted “my story” and a video that I had made, about CRPS.

(Here’s the link: http://www.rarediseaseday.org/stories/6082)

I was really excited to share more about this day as people started asking me more and more questions.

After calling around, I found a venue to host my own “Rare Disease Day” event. Within minutes, the Township Supervisor, Pat Williams (whose helped me with “Pain Awareness Month” proclamations etc.), found me a venue in the Canton Leisure Services building, called “The Summit”.

The event day finally arrived! But as I was getting things ready to take with me, I had a bad fall. In trying to maneuver steps without anyone else home, my foot didn’t clear the step and I stumbled while going upwards. I was in a great deal of pain, but I couldn’t let down those sho were counting on me. My husband and I decided to take my wheelchair, which I usually reserve for outings where I might be walking a bit more. I needed it and it helped me get through the evening.

This Awareness event turned out to be one of my favorites! It was in the lobby, so people were coming “in and out”. It was quite busy with people from the pool area and the gym.

Many people stopped and asked questions Like, ”What is Rare Disease day? What is the US Pain Foundation? Why are you here?” Etc. I had some medical professionals stop and we exchanged our “Rare Disease Day” online stories with each other! They showed me their photos and told me about the research they’re doing on a few “Rare Diseases.” There was another medical professional and a couple Physical Therapists who also were very interested in the INvisible project and other information that I had with me. I got the chance to give out my new chronic pain Support group information when several people stopped to tell me their “story.”

I had downloaded the Rare Disease Day info packet from the website and made copies. Those were also popular with a few High School students who stopped by my table, at first because the candy bowl caught their eye! But they told me about upcoming projects that they have to do. They wanted all the information that they could get. Not surprisingly, there were many people interested in the Migraine & Rheumatoid Disease editions of the INvisible Project. I even had the family of a Veteran, ask if they could take one of those editions home for a relative who’d been in the Korean War.

All in all it was the best event I’ve had and it felt like I reached a lot of people, answered many questions and listened to many sad stories. But I also gave US Pain Foundation information to several persons. It felt as though I was giving them hope. “Hope” for themselves or someone they love who lives with chronic pain due to a rare disease.

Lastly, I think that I recruited some new US Pain Foundation, Chronic pain Support group members. They seemed genuinely excited to have a platform to be heard and to talk with others going through similar situations.

I Cannot Do Everything, But I Can Do Something


Don’t let anyone tell you that one person cannot help to make changes within our society. When someone takes the necessary steps to help make changes happen, they are assured to be part of the outcome. Let me make this less obfuscatory and explain it in a more concise way. Back in the Summer of 2017, I had read an article from a Michigan newspaper, that explained how a husband had gone to the emergency room of a hospital, to find his wife (then girlfriend) on a gurney, writhing in pain, while a physician stood by watching monitors. The emergency room physicians had “marked her as a drug addict”, before knowing any of her history or taking the necessary steps to find out. The Dr. told her husband that his wife was “complaining” about pain. Then in his next sentence, the Dr. said that “addicts often come to the emergency room looking for opioids”. The husband was very upset by this because his wife was not normally a person who “complains” often. He knew she’s had a “nerve block” procedure that day and something must have gone wrong. She has had damaged nerves in her back since a skiing accident long ago. She had had tried over 40 medications and a number of procedures. The only thing that had helped this chronic pain patient who was lying there in horrific pain, was a “complicated treatment plan, which included opioids”. The emergency room physician finally relented and gave her just a fraction of her regular dosage, but this was at least enough to get her out of there and taken home.

This story is not unlike many others that I’ve been hearing and reading about for the past couple of years now. Some of the stories ended much worse that this one. What if this woman had no one there to advocate for her? I was upset by this story and it stirred something inside of me. Not only does it tear me up inside to hear stories of others being treated badly, but also, I am a chronic pain patient. I had already written letters to the President of the United States, the head of Health and Human Services, to my two Senators, my Governor & Lieutenant Governor. I wrote about the under treatment and loss of treatment to the chronic pain community since the CDC guidelines were revealed and then used as if they were “law” of the land. I had found out about a new Michigan HB-4601 that was going to become a law in the Summer of 2018, if I did not try to do something to change it. I decided to write a “plea for the chronic pain community” a bit closer to home. I sent a letter to the representative for my district, in the Michigan House of Representatives. Instead of the regular “form letter”, I actually received a note from him; asking me “if there was anything he could do”? He told me to contact him, “if I had any questions” and so I did. I asked if he would meet and speak with me for a few moments regarding HB-4601(*this was a House Bill that was to become law on July 1, 2018. Stated in that bill, was a 100MME ceiling limit for all chronic pain patients. Mixed into that bill, were new rules about acute pain. There was a 7 day prescription limit & persons had to physically go into the physicians office after the 7 days were up; and then go to the pharmacy to get the new script if needed. There was a bit more, but that was the gist of it).

I met with my House Representative because I just needed to do something to try and change this upcoming Bill so that it would take become the law. I don’t like to complain unless I know the I’ve done all that I could do to help others and myself, if needed in the future. If passed, this law would make a 100MME for everyone with the exceptions being: hospice care and cancer care. But the FDA already stated that “there was no scientific evidence that cancer pain was any different than other chronic pain conditions”. (*This information is found by googling: fda-2012-P-0818. Then by looking on page 9, paragraph 3 of this “e-copy” response to Dr. Andrew Kolodny, from the Department of Health & Human Services on September 10, 2013.)

I went to my meeting with confidence, kindness and some research that I had done. Human beings metabolize medications differently, as do various illnesses. I spoke to him about the HB-4601 and I told him my own story. He saw a person and could put a face to this issue afterwards. For the first time, he was introduced face to face, with chronic pain in a real person who was sitting across from him, talking and sharing.

At first, he was taken aback that someone could be on a normal dosage of Opioid pain medication and not be groggy or sleepy or “high”. He told me that he had not thought about the difference between dependency and addiction. We had a very nice conversation and then we went our separate ways.

Afterwards, I sent him Kate Nicholson’s “Ted Talk” and the information from George Knapp’s video about Opioids and the “The Other Side of Opioids” . Whenever something that might help the pleas of the chronic pain community became available; I would send it to him. My hard work finally seems to have helped. On December 28, 2017, Michigan’s Governor, Rick Snyder signed into Law, SB-027. That Senate Bill which passed, is now Public Act 251 of 17. In researching that law, I found that there is allowed a partial fill of a prescription for acute pain. It limits a first prescription to 7 days and then a physician can verbally call in to the pharmacy or fax a subsequent prescription for acute pain, if needed. This is good news for the chronic pain community of Michigan. That HB-4601 is now going dormant and nothing more will move on that, according to what I was told by the House Reps secretary. The entire Law or Public Act-251 of 17 can be found here: http://legislature.mi.gov/documents/2017-2018/publicact/pdf/2017-PA-0251.pdf

The board, unanimously passed a resolution finding that the original 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 further advocated a balanced approach “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary.”

Government can and must think about and help to resolve the opioid epidemic. Too many people are dying from the abuse of painkillers. But more and more they are realizing that the problem is not the prescription pain medications given to legitimate chronic pain patients; but they are seeing more and more Chinese Fentanyl sent through the U.S. mail service. We need to address this but at the same time we should not have to sacrifice chronic pain patients lives in order to save the drug addicted persons. We don’t have to hurt someone in order to help another. We can protect people and not swing to the extremes, one way or the other. We can be thoughtful and diligent in helping those that suffer the disease of addiction without being thoughtless to the chronic pain community; a group of people already suffering.

I accomplished most everything that I have done, from the comfort of my own home and even my recliner. The only time that I had to go out of the house for any of this, was when I met with the House Rep., in early September 2017. He met with me very close to my home because I’m unable to drive more than a couple of miles for “personal errands’. We met in a coffee shop and had a very real conversation. We must let our stories be told and our faces be seen. Our government leaders need to hear true stories and see that we are real people who are suffering and who can and will be affected by their choices. In the words of my personal hero, Helen Keller, I say this: “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something that I can do.”

I Am Invisible No More!


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Hello Luvs,

I wanted to post the video that I made for Invisible Disabilities Association. I was hoping to ask you for a favor? I have entered this video in a contest, in order to spread awareness of Invisible Illnesses. Would you please be so kind as to just click on the video below and then watch the 3 minute long Video? Then right above the video, after you click on it, you’ll see the word “VOTE”! Please click on that word and that will cast your vote for me!

Thank you so very much! If you could, I’d be so obliged if you could SHARE the video on your Facebook pages and in your groups, Tweets etc. It would be really awesome to make Invisible illnesses more known! Thank you for your vote, in advance. I appreciate it so much! Ohhhh please always us the hashtag #Iaminvisiblenomore thank you !

My video “I Am Invisible No More” Is Right Here, When You Click!

http://woobox.com/yskmzt/gallery/0by3nprZkI0

New Year, Old Fear


The New Year always brings hope of a new beginning and fear of the unknown. Especially in this time of unrest and uncertainty; there is a panic in the pain community. I see it around me and I feel it each new day. People are starting to come apart and pull away instead of moving together as a community to fight the thing that we all fear most.

Nobody wants to be left to die. We don’t like feeling ignored and uncared about. Drs are running away and leaving in droves. There’s no one left to listen, care or treat those with horrible & high chronic pain conditions. There are groups sprouting up from other groups. It feels as though there are many who wish to be the one to “save the pain community “. But in reality we each can be our own hero. We need to depend on ourselves to get out of this mess.

Try your best and do whatever you are able to do. I’m sure you talk with your families on the telephone? So call up your Senators office and tell him your story! You’ll probably get a staffer, but that’s OK! Write emails much? Write an email to your state reps, Senators and your Governor. You don’t need to be eloquent. They need to see faces, hear stories and come to know us as a community of real persons. Ask them if they can remember a time when they had the worst pain ever? Tell them that this is how we feel most days! Let them know that our Drs need to do the Doctoring. The government has enough to deal with; and so allow the Drs to make informed decisions. After all, they went to school for 12-15 years, some of them. They do know what they’re doing.

Turn your fear into action and if you’re just too sick; see if someone will advocate on your behalf? If nothing else, we need to realize that we are worthwhile individuals. Each of us has something to offer in this life and we are not expendable. We deserve to have love, respect and caring. We have a right to be taken care of just like anyone else does.

We must remember that there are bad people in every walk if life and in each profession. There are the good and the bad; the ying and yang with a balance someplace in the middle. There are good and bad politicians, teachers, and more. Drs, go into this career mostly because they want to heal and help others. There are bad patients too, but most of us just try to do whatever we are told and we follow protocol.

The thing that those in power are forgetting, is the balance. They are going with an all or nothing attitude. Why not realize that there are many precautions in place now with the PDMP and more? The people who want to break the law are going to find a way to do it! Those who are good, law abiding citizens living with daily chronic pain are the ones suffering. I think somehow they know we are physically weak. They think we are unable to fight for what we need and therefore they will make decisions above and for us. But we are not mentally weak. We must join together as one voice and support each other. There is no glory or fame here! There are peoples lives at stake. The right of every human being to live in some semblance of comfort.