Showcasing what many of us live with and deal with on a daily basis:
Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!
Here’s the link:
We arrived at the University of New England in Biddeford, ME on Thursday evening, just as people were sitting down to dinner. Due to some special health needs that I have, we had driven for 2 days to get there. It was during the final phase of our drive, that there was a terrible truck accident on the 495. Traffic was halted for 2 hours on both sides of the highway and people were getting out of their cars to see what going on. We turned on the Am radio to find out about the reason(s) for the fact that both sides of the freeway were cleared and stopped. Then we saw a medical helicopter come and touch down on the other side to pick up hurt passengers and drivers possibly. We were praying with other drivers that the people would be all right. I was a bit worried about getting to UNE, but not as worried as I was for those poor people who were injured or worse. We were talking with other people who’d gotten out of their cars and we even prayed with them for the safety of those involved.
We finally were traveling again and arrived at the University safely. Instantly, I started looking for the friends that I’d longed to see for so many years. Frantically texting them, I was wondering where they were and what they were doing? These girls and I had started group texting along the journey to keep our spirits up, take care of each other and keep tabs on our friends. Flora and others came to my rescue! They took my husband and me to the dining hall so that we would not miss dinner. I first found Christa, the one I call my “adopted daughter”. She has called me “Mama” for many years and we have become very close over time. Christa and Flora made sure that I had a place to sit with them as Heather came up and gave me a gentle yet wonderful hug. I got to meet Jaclyn, who I’d been excited to meet and get to know better. I was so happy to see all of them, I could barely hold back the tears of excitement that the moment had finally arrived. I met Barbara, Crystal, Melanie and her mom, Laurie. I finally got to meet Casey, and then Paul and saw so many other familiar faces that I would get to know throughout this most awesome weekend. We went to the hospitality suite after dinner and that’s where we got checked in, and collected the shirts that USPain gave us to wear during each day of the Summit. There was a feeling of comaraderie like no other as I met each new person, whose names I mostly knew. All of these people were fighting their pain, to come together on this first night. Most of us were running on Adrenalin & excitement after having traveled far and wide to arrive at this retreat. We then went to bed and tried to recover a bit before the weekend ahead.
Friday morning couldn’t come fast enough for me. We all arrived and were sat in a big theater/lecture room. First of all, I thought it was great that they gave us all water bottles in our USPain “bag of goodies” as we checked in. There was concern for us staying hydrated because water, coffee, lemonade and teas were readily available outside the lecture hall door. There was also a variety of fruits, cookies and some Nutri-grain bars. While walking in, you could see that this group was set up to “look out” for us and each other. The first day there was a couch to provide for the special needs of one of the chronic pain patients. Blankets were available to us because it was very chilly in the lecture hall. After the first day, Paul Gileno, Casey and others made sure that more blankets were available. Then additional couches, and chairs were brought in for others who also needed some extra comfort. This was done so that we could all be able to stay and listen, rather than have to get up and rest someplace else. They saw a need and they took great care of us.
Up first, Paul Gileno spoke as he Welcomed us as a “family” and introduced himself. He spoke about his own journey with chronic pain. Paul explained the meaning behind the color “blue” for the USPain Foundation and why he started it. We were waiting for some deep meaning behind the color, but Paul told us as he chuckled, that it was “just because he likes the color blue”. Next he was awarded a beautiful hand carved Cane with Blue accents on it. There are no words to describe the beauty of this cane; also the love and inspiration it took to create. I am in awe of the talent and Artistry of a fellow Chronic pain patient named “Ernie”. Paul said that the cane will be everywhere USPain Foundation goes, to remind everyone that #peoplewithpainmatter. I can’t remember everything that was said, but he said something about how people with pain are so creative and still useful persons in society with aspirations, talents and dreams. Either way I know he is very proud of that cane and he did positively say that it would be taken with him to every USPain function.
Next up was Shaina and she spoke of compassion and respect for each other. She explained that advocates need to continue to write letters to lawmakers. She told us “take care of yourself first”; and added that our caregivers support us and they also need support. We need to work with and continue to network with fellow pain warriors. We started after this, talking about “mind, body and spirit”….What we do to get our mind off of the pain?
Then another pain warrior came up to speak and it was Cindy Steinberg. She spoke about advocacy. She said that like Ghandi once said “We need to be the change we want to see in the world”. She explained that one way to make change is to be the changing force. Use Social Media, Public speaking, meetings, rallies, Television and public hearings. There have been successes in these kinds of advocacy outreaches. One of which is the Bill in Massachusetts regarding Opioids. The Bill stated at first that persons with pain were “only allowed 3 days of Opioids no matter what!!! “They pulled people together; groups rallied behind each other and they said “that’s nuts”! They got the Bill to have an “exception for Chronic pain, Cancer and Post Operative pain!” It was a victory in the corner of people suffering with chronic pain. We next spoke about “Step Therapy” and that CT 2014 hurts patients. Step therapy is in my understanding, where you start at the bottom and they try everything cheap and you have to “fail” that in order to get to try something else that might cost insurers more money. Essentially it is used by insurers to control cost. Next Cindy spoke about the “National Pain Strategy”, it’s a comprehensive plan to help pain patients.
Next, Tiffany introduced our panel of 3 lovely women, that I could really relate to. These women were: Ellen, Juliana and Wendy. They spoke about advocacy and “What makes for successful advocacy?” They went on to say “Why do you think your story is important? When you speak say that, be authentic and keep it real. They said that in being an advocate, one good way to start a conversation is to start out by stating something that everyone has felt or is familiar with. You can start with saying “just imagine you wake up every day feeling like you have the flu”? The three of them also explained that advocates need to get the media to know us. Other tips were: “Tell your story because that’s how you make a personal connection. Your story does make a difference. Along with helping others in pain, you are helping yourself”. They went on to explain the best way to talk to a Senator or state Representative. “Let your story grab them, if not visible make them visible”. They coached us to write letters, explain and allow Dr.’s to know how we feel.
Next up was a representative from the Pfizer drug company, Barbara Phillips. She discussed how “Opioid prescriptions have tripled”. (*Side note: In my opinion, the amount of Dr.’s treating chronic pain has gone up. The use of Opioids, I believe has risen due to the fact that more people seek treatment for chronic pain, the medications have low side effects and are more readily available; or they were before this pandemonium. For example in the 50’s and 60’s, the use of antibiotics went way up. It’s because they were more readily available to help people. We are getting “lumped together” with people who are “addicted” and not medically dependent on the Opioids for relief of chronic pain). Ms. Phillips says that the education regarding chronic pain, for Primary care Dr’s is almost non existent. The Medical Dr.s only get approximately 9 hours of education and training with helping chronic pain. But the Canadian Veterinary Dr’s get a whopping 87 hours of training with chronic pain for animals. She explained chronic pain as being “the 5th vital sign”. She talked about the differences between acute and chronic pain and said that PCP’s don’t understand chronic pain.
Later, Ms. Phillips went on to discuss the different kinds of pain, which are: Nociceptive Pain (bone fractures, sprains, burns, bumps and infectious or arthritic disorders), Neuropathic Pain (Post shingles nerve pain, RSD/CRPS/Causalgia, cancer pain, phantom limb pain and Peripheral Neuropathy, which is widespread nerve pain such as Diabetics live with). Then there is a third type of pain called “Mixed Pain”, which is similar to Fibromyalgia etc. She says that assessing and managing pain is easier after identifying which kind of pain you have. She talked about why she feels that “Opioids are over prescribed”. Ms. Phillips believes that Opioids were an “easy script for Dr.’s to write, and they underestimated the risk to patients taking them”. It is difficult to asses patient risk (use, misuse, diversion). In Misuse she explains that she meant “taking more than the prescribed amount”. In Abuse, she referred to “using it only for euphoria” and by Diversion, she explains “removing the Opioids by sharing of them with family members etc.” She also talked a bit about Abuse deterrent Opioids with the agonist/antagonist approach; and there was some educational information regarding Opioid use. She ended with her fact “that 50-80% of Opioid deaths come from chronic pain”.
After Barbara Phillips from Pfizer was finished speaking, we got to meet Senator Hill from Maine. She was delightful in that she got my attention and my admiration right away when she spoke of her love for animals. I love animals and feel the same way, so it got to my heart right away. Sen. Hill discussed the importance of advocacy and how its “scary” to campaign and go to the Capitol. She said that while legislators are “scary”, they’re just “regular people”. We need to “get up front, don’t be afraid to talk and go tell your story”. She also said that if you are “up against the clock, have your testimony in writing”. In giving us some good advice, she told us that they prefer to have the testimonies be about one page. Make bullet points and try not to or DON’T say the same things as others have said! They want to hear true, real, honest stories. She stressed that we should try really hard not to repeat. I’m talking about if you are going to lobby, you should be a real person and tell your real story; push the point.
Some people got up and asked questions and spoke out. The chronic pain patients said “What do we do to teach lawmakers about the importance of Opioids when needed?” In my opinion, they are all right to be used sometimes. She said she would want to hear “how we really need it but give suggestions on how we’d not allow others to misuse it. Come and tell her how it helps you but how to regulate it for those who misuse it.” I am thinking, why is it up to the chronic pain patient to figure out how to make other persons not misuse the Opiods? We talked about “splitting it into two issues”. It’s not only one issue and we are being put in the same group together with those who are abusing the medications. Senator Hills’ eyes became widened and she spoke out and said “Nobody’s ever said that before”, and we do need to split it into two groups! I’m saying that we aren’t “addicted” but physically dependent! We don’t get a “high” from the Opioids. If you ask 99% of the chronic pain patients, we will tell you that we do NOT want to take this medication. We wish that we did not need it to help with our pain. But the fact remains, that it DOES help some of us! She instructed us to meet in and start with our own districts’ Health and Human services community. Her information was very invaluable in that she gave bullet points to us in how to be a better advocate. Here are a few of them:
- Pick an issue and narrow it down….prepare and build from that!
- Go to your own house and federal people in your own state
- ADVOCACY: step #1 is to impact change- know your basics and bullet points (know the different parts of the govt. such as: the local and state and then the federal government; which is: Legislative, executive and judicial
- Congress is responsible for passing legislation. Each state has 2 senators and you should get acquainted with them. You can visit: congress.org and house.gov or senate.gov
- Take advantage of short meetings. Be ready and be direct! For example: go to candidate meetings, town meetings. Call and make yourself available and use Social Media whenever possible
Then after Senator Hill was finished, Shaina came back up and told us to learn about issues on USPainfoundation.org. Take what you know and what you have learned and try to make a difference. Share your story in that you can write a letter to the editor of your town’s Newspaper (to go to the correct person, look on UsPain.org). Shaina made us all laugh and giggle when she told us that “she wants to help” and it’s OK to “bug her”!
After lunch, we came back to an afternoon discussing “how to tell your story”. We must remember that so many of us, those with chronic pain can still do some beautiful and productive things. For example there were people there who’d made beautiful jewelry, and how about that gorgeous hand carved cane that Ernie gave to Paul at the beginning? We do have something to give! Also as far as getting our story out there, it was reiterated that when Public speaking to lawmakers or while testifying; write down short ideas ahead of time. You don’t need to memorize because they want to hear from your heart. You usually only have about 2 minutes to talk, so make sure you know what the US Pain foundation is, and bring copies with you. Did you know that US Pain foundation has 100,000 members? Get resources from US Pain Foundation and “BUG” Shaina! LOL….
Regarding the Federal government, for example the FDA, you’ll have a more “polished” audience and only 2 minutes to speak. You’ll get a warning sound when your time is almost up and then they just cut you off! You need to have paper and write down what you want to say. Get it down to 2 minutes! Your story is very important!! If you do use facts, please make sure they are correct, accurate. Regarding the State government, you’re testifying in a less formal manner. You’ll more or less be in front of a committee. Keep eye contact, keep to your personal story and your bullet points! Try to explain your disability and always arrive early when you testify.
After all of these discussions were finished, we heard from Dr. Edward Bilsky, a professor at University of New England. He had a Pharmacological approach and a scientists approach to the Opioid misuse. He was in agreement and supports the National Pain strategy. He discussed that he feels that “Opioids don’t help chronic pain”. In talking about some of the Abuse deterrent drugs, he said that “Naltrexone stops cravings”. He feels that “the problem is not one of addiction so much as it is of a misuse issue.” He went on to say that 2.5 million Americans meet the criteria for Opioid misuse. He called Opioids, “Heroin”. I really admired Dr. Bilsky and he made some very good points. He’s a very intelligent professor and I got the impression that he was a “family man” and “trying to help”. But I must give my opinion here, right? This is my blog and I have a right to my opinion in a respectful manner. My opinion is that Opioids have helped me over the past 14 years. I’ve actually gone down in my amount of medications, because I wanted to partly, and then because I was forced to later on. The medications do lessen my pain, though as my Pain Management physician says, “he cannot take the pain away, but only help to make is less”. I don’t feel that Opioids are “Heroin”. I feel that my Opioids, lessen my pain and I have never “craved” them. If someone asked me, I would tell them that I do NOT want to take this medicine. I have done all that has been asked of me and not much has helped my multiple, real pain issues and diagnosis’.
The part that was the most fun, was Friday night. We had a Lobster bake out by the beach and the ocean! It was an awesome sight and the man cooking the lobsters opened up the foil coverings to show me the display of many many lobsters cooking over a fire grill! We ate together with 50 other US Pain Foundation ambassadors from across the country. People were laughing, having fun and taking lots of photos. Dr Bilsky was there and was a part of it all with us. I did not have to agree with all that he said, because I look up to him as a Mentor who knows different things about this than I do. I can only say what is in my heart and my head, and how I feel. I think he would respect that too.
We went down towards the beach after eating Lobster, corn on the cob, potatoes and some wonderful strawberry shortcake for dessert (with real whipped cream on top!). My husband, my friends and I laughed, talked, cried and took action shots. We pretended to be “US Pain Angel’s” in parody with “Charlies’ Angels” (*well, not my husband….LOL, he took the photos). It was good for our hearts, minds and souls; to be around people whom we have known for so many years, but never have had the chance to meet in person. I felt a quote from the “Grinch” book come to mind in that “my heart grew 3 sizes” that night. My heart did grow on this trip. I felt love, friendship and comradeship with these people who were like me in so many ways. We may be from different sides of the Country, but we all took care of each other and watched out for each other. We made lasting friendships with the new persons that we met. It was an awesome sight to see people exchanging social media names with each other, phone numbers and contact info.
Day #2 of the pain Summit was about getting people to sign and support the Ntl. Pain Strategy. Cindy Steinberg spoke about this and then spoke about CARA- comprehensive addiction and recovery act of 2016. We learned about the Federal Pain Research Strategy- a systemic plan for future pain research. We found out that if you want to learn more about this “Non medical switching”, you can watch You Tube videos about it. Research shows that Non medical switching leads to worsening side effects and conditions. When the insurance payers just decide to switch medicine on people, it’s usually without the knowledge of the persons attending physician! There are 42% more E.R. visits with a 12% higher rate of outpatient visits as well. Shaina was explaining that “Biosimilars can have bad side effects versus Biomedics”. They want to give us cheaper and less effective drugs. “They” meaning insurance companies. We need to speak out and restrict “Biosimilar drugs”
We discussed “Step therapy” and how it is terrible for 67% of patients. They end up waiting for help as they get more sick and go through withdrawals sometimes. There is a recent article in the American Journal of Medicine about “Step Therapy”. Then we moved on to “Abuse deterrent therapies”. It is an interesting new technology, in that the drug companies make the medications impossible to crush, chew or melt; in order to get a “high”. This also deters people from using it for the wrong reasons or selling it on the streets. A place to get information is: WWW.Painconnection.org and their phone number is: 1-800-920-0664. Their FAX # is: 1-800-910-6951.
At the end of the day, we got some useful information on Bill tracking/legislative tracking. We use this to find legislation on a certain issue; to learn about and track it. You can visit WWW.uspainfoundation.org, and go to “Bill Tracking” and track by state and /or by issue. The top right corner of the page tell us how many bills are going through right now. You can go there to find the Bill title, Bill sponsor and the status of the Bill.
As you can probably see, by the second day, I was in more pain and could not focus quite as much. I tried to take notes as best I could. I was so impressed by the actions of Paul, Casey, Shaina and whoever else helped us. Many of us, the pain patients who were in attendance, were very cold and very much suffering with a lot of pain, due to the extra traveling, unfamiliar surroundings for sleeping and having to be up and listening intently for such long periods of time. I know for myself, I’m on Disability and just not able to do things for very long periods of time. They took the time to listen to us and got more blankets. They brought in extra couches & chairs to give more people a place to rest and still take part in the conference.
All it takes is a kind gesture from someone else sometimes to make us feel cared about, and our pain acknowledged. Just the fact that someone notices our needs or takes care of our wants at times, really makes us feel good or at least better, even if it is feeling better inside of our own skin. There was a time during the conference when I was starting to fade. I was not feeling good and my pain was higher than usual. I was so grateful to Paul, Casey, Shaina and the others who got the extra chairs etc., so that I could spread out a bit. At one point, Casey was in front of the room and she looked over at me. She could tell that I was not feeling very good. Mostly, you can see it my face when my skin turns more pale and I stop being the animated person that I usually am. Casey gave me a certain nod and smile; a glance to let me know that she knew and she cared. It meant the world to me! Then Christa,(my “adopted daughter ” all of these years, whom I finally got to meet at this conference) who was sitting next to me in another chair with her legs also up on a different chair, took hold of my hand. It was a feeling of friendship and deep feelings that one can only share with someone else who truly understands. Then my husband and caregiver, Craig took my hand and I felt a rush of relief go through my body knowing that I had someone there with me who was in this with me for the long haul. As Ellen, another chronic pain patient, told me “we are lucky that we know a true connection and deep love, that others don’t get that lucky to experience”. I felt it again when Craig stood up to speak about care giving, after Stu had done such a great speech on it. My husband got up in front of 50 Ambassadors, many other care givers and the administration of the US Pain Foundation, and professed his love for me. He spoke of how it is for him, on the other side feeling helpless sometimes. How he can only be there for me and how he “loves me so much”. It made me tear up and a rush of emotions ran through me as someone handed me a tissue.
That night we had a campfire, made S’mores and got to hang out with the neatest 13 year old boy I’ve ever met. He was “Ty” and he was the best. How many 13 year old boys, would get up and get things so many times for all of these different people with pain? Ty did that and more. He brought me more soda and more cookies! He made me laugh at the fire pit and cry when I heard his mom read off all of his accomplishments to help children with pain. What a neat kid and one that any parent would be so proud to have. I know that Casey is very proud of him. I am proud to know him and I know where he gets his strength and tenacity, we all do. I could see it in their interaction together, the mother/son bond is strong. Casey is someone who I was excited to meet and who became a close friend that weekend.
So many people that I felt a bond with that weekend. For about 54 hours, I had the pleasure of feeling a closeness in knowing that no one judged me and we all stood up for and looked out for each other. Nobody was left out and when I wanted to do a meaningful song in sign language, they found a way to let me do it in the hospitality suite on Saturday night. The employee that was giving us soda and other drinks, had a blue tooth speaker. She hooked my iphone6 up to it and my song suddenly was loud enough for everyone to hear. I used to be an Interpreter for the Deaf. Now, due to a MVA in 2002, I am Hearing impaired and have 2 hearing aids. I don’t need to hear the words with the song together, because I learn the lyrics first and try to go with the music. I got to do my “thing” that I CAN do. I am no longer able to Interpret, but I can do some artistic interpreting for a short period of time. I signed an ASL cover of the song “Stand in the Light” by Jordan Smith from the “Voice”. Sure, the music stopped a few times and it wasn’t perfect, but nobody cared. I got a round of applause and people told me it was “beautiful”. It made me feel so good. I remember, April came up and suggested that it be “the song” for the US Pain Foundation. How cool is that? I got to “do my thing”, but it was not for me alone; I wanted to give a “gift” to these people, these special friends that I had gotten to meet. To show my love for them and to express that we should still “be who we are, be true to ourselves; to stand in the light and be seen as we are”.
Thank you US Pain Foundation, for a beautiful, wonderful and memorable weekend. I got to make so many new friends and more whom I wish to get to know better. Craig and I made good friends with another couple who we felt bonded with, Stu and Ellen. I can’t wait for next year and I hope to be behind the scenes helping more, because I would love to be able to do more for those who are doing so much for us…thank you Paul,Casey, Shaina, Nicole, Lori and everyone at US Pain and everyone who was there…thank you so much!
I wanted to write a bit about whats happened with me and what is going on so that others like me, with Chronic pain, several Chronic pain illnesses and nerve pain Diagnosis’, don’t get treated as I’ve been treated. If I can help even one person with this post, then it will be very worth it to me . Now, the short version of my recent saga is this: I was in a MVA in 1984, hit by a drunk driver….causing whiplash and the beginning of Degenerative Disc Disease. In 2000, I fainted (unknowingly I had Dysautonomia already at that time). My husband was inpatient with Peritonitis following a burst intestine. I was running from the hospital to home and back again to make sure my husband and my two young daughters, ages 8 1/2 and 11 yrs old were cared for and felt loved. I was doing it all alone with no help from any family or friends. I was doing laundry at midnight and I was exhausted. There is a metal pole in between our washing machine and the dryer. I bent down to put the clothes into the dryer and I hit my left frontal temple on the metal pole. I felt an “icey” feeling go down my face and I fell to the floor. No other adults were home and I was in the basement, 2 floors down from my sleeping daughters. I awakened some time later but unsure of the time frame. When I awoke on the floor of my basement, I could no longer feel the left side of my face. When I smiled my left side did not; just as though I’d had Novocaine at the Dentist office. I couldn’t do anything for myself because I was alone with my 2 children and my husband was very very ill and possibly could have died and he was in the hospital. My youngest daughter was a champion Scottish Highland dancer at the time. She was being judged for “medal testing” by a judge brought in from Scotland. I paid a fee, she was very excited and had worked very hard for this chance and I could not let her down. Also, afterwards I was going to the hospital again to see my husband. I had to just make sure that I did not smile so that my girls didn’t notice my mouth going down on left side. I was a little scared and didn’t feel so great, but I drove both of my daughters to Royal oak or a bit farther, for the medal testing. My youngest was tested and did marvelously!! She was being judged for Silver medals and she got her Silver medals! It was awesome!
I brought the girls home afterwards and had a neighbor watch them while I went to see my husband. On the way to seeing my husband, I stopped in at an Urgent care to see about my face and head. Also because my eye was not looking right and it was “wandering”. The urgent care put me in an ambulance and took me to the same hospital that my husband was inpatient at. I was livid and didn’t want to go. My car was left in the parking lot and we honestly had no one to help us! What was I going to do? I was starting to get admitted and I left against medical advice. I went to my husbands room and saw him and I was in luck that another friend was visiting him at that time. She offered to take me back to my car. Later on, I went home and the next day I went to see my Physician. He sent me right away to see his Neurologist friend. I had a CT scan of my brain and an EMG. I had 4 inches of nerve damage in my left face and I had brain swelling. I was given a “Medrol dose pack” and then nothing else ever happened from that incident. The fact remains that my smile still goes down when I’m tired or sleeping. My eye wanders in most photographs taken. My face has become asymmetric because of the nerve damage. Most people cannot tell so much, but a Neurologist that I saw did notice and of course, I can see it. My husband can see it as well.
Then, in 2002, I was again a passenger in a MVA. I was unconscious for 25-30 minutes. I suffered a MTBI or “Mild Traumatic Brain Injury” and had to go to a brain injury or TBI rehab ctr for 3 yrs outpatient. I had 12 surgeries including: 2 pacemaker surgeries (different in that the first was placed deep into my pectoral muscle and then 10 yrs later it had worn a hole right through my pectoral muscle and I needed a 3 hour muscle rebuild surgery and then to replace the pacemaker….this caused so much trauma to my chest, left arm area that my RSD/CRPS went straight to that traumatized area; even though my Neuro-Cardiologist did research. He learned about doing a “Bipvucaine” internal surgical wash to head off the spread of the RSD/CRPS. He really tried but it went Systemic in 2013. I ended up having knee surgeries, shoulder surgeries (with screws put in), left facial surgery, foot surgery (where the RSD/CRPS type II started) and more. I had two torn meniscus’, two torn rotater cuffs that went into adhesive capsulitis and so much PT and OT for 8 years that it seemed endless. I ended up getting an “ENG” test which showed my Cerebellum was damaged and it was injured in a “central dysfunction”. I fell often due to balance issues and still do today. I had to have special prisms in my glasses as I see halo vision, with severe dry eye and I have a Convergence insufficiency. I had to get 2 sensory neural hearing aids also as a result of the Traumatic brain injury; due to moderate hearing loss in both ears but left worse than right. So much was different including that I went from never even taking an aspirin for a headache to having to be on a pretty good amount of medications for “chronic intractable pain”. I had no idea that I was entering a “whole new ballgame” in my life. Meaning that I was in a hospital bed in our living room for the first 3 yrs because I tried many pain medications and they all made me ill or I was allergic. I went to a pain Dr. who gave me: trigger point injections, epidural blocks,other injections, biofeedback etc…I went through their psychological testing to see what kind of personality I was or was not. I passed with “flying colors” and was told that I did not have any signs of having an “addictive personality”. I was offered an intrathecal pain pump, which is surgically placed under the rib cage near the abdomen. It is or was, the size of a hockey puck. It is something that gets filled monthly with Morphine or other kind of pain medication to keep you comfortable on a regular basis. I already had a pacemaker and did not want something like that seemingly uncomfortable appliance inside of my gut forever.
Next, I was put into the hospital for pain control in 2005. This was 3 years after that horrific car accident had changed my life so much. I met my physician’s new office physician. I thought he was a big “teddy bear type” personality and seemed very patient and kind. Being a survivor of abuse, domestic violence and suffering from PTSD and actually on SSDI partially for that reason, I needed a General Dr. with that kind of bedside manner. The other one I’d been seeing was also kind, but he was very “quick moving” and didn’t take the time listen very well. Along with the fact that he had a story for everything, and this was just not “funny”. Finally, I tried what he told me to try and it was a combination of a pain patch and a pain lozenges, which had only been approved for cancer pain and for the horrible burning pain of RSD/CRPS; which I’d been diagnosed with by 4 different Physicians. I just didn’t know what it was and didn’t want to believe it. I had never even heard of it before. Well, this combination of medications is the first thing that didn’t make me terribly ill and it got me off of the couch after 3 grueling, long years of being pretty much immobile and not really going anyplace except to the Dr’s and to the rehabilitation center for TBI rehab.
That was 2005 and now we are in 2015 and my dosage was increased now and again up and until about 2010. After such time, I never had to have another increase and my pain, though still apparent, was bearable. I was able to go shopping with a friend for awhile. I was able to go to my daughters wedding. I was even able to go to Disney World in Florida in 2012, to celebrate my youngest daughter achieving her Masters degree! Of course, we took my wheelchair and I used that for the parks, and I had a cane for looking in the smaller stores. But I could go!! I did go!! It was a dream come true; and although I was still in pain, I could feel it and it would get worse the more active I would become; I still went!! I had asked my Dr., my GP, to “help me get down on a lower dose of these Narcotic pain medications”. He kept telling me that I “don’t want to end up on the couch again or in the hospital bed”. He would tell me again and again “not to worry about it” and to “let him worry about it”. I would give up asking and go about my “half life” that I was living, though still better than living in my front room on a hospital bed. Then a few months later I would bring it up to him again. I would say “Dr. (Pete) Bullach Jr., I am afraid of being on this kind of medication for so long. How am I going to get off of it? When can I try to take less? What can we do?” Dr. Bullach Jr. would say to me again, “let me worry about it and when the time comes, I will just admit you to the regular hospital and we will knock you out for a couple of days and get you off of the meds and start with something else”. Whenever I would bring that up or ask him about “WHEN” we could do that, he again would tell me “not to worry about it” and to “let him worry about it”. He always told me that the medications that I was taking was fine for me and for the amount of pain that I was having. He told me that he even “fought it out” with the “medical director of my insurance company” and he told them I needed it and why and they accepted it. He just kept on telling me that I “didn’t want to end up on that couch again, like I had been for 3 years, or the hospital bed either.”
So …in September 2014, we got a letter from my insurance company, telling me that as of March 1st or so, they “would not pay for my pain medication any longer, unless I went to a pain Dr. and he/she agreed with my Dr. Bullach’s treatment regimen.” Of course I got frightened because I do know that if taken off of these kinds of meds quickly, I can die. So my husband and I took the letter to Dr Bullach and he told me “not to worry”, once again. He told me to make an appt. with the old pain Dr. that had seen me for the 1st 3 years following the MVA. He told me he “would speak to that pain Dr and he would send him any and all information to make this work out just fine”. I didn’t worry because he’d been my Dr. for 14 years and I trusted him! I had been to many Dr’s over the years and nobody ever told me that I should be worried! I had surgeries and no one ever told me that I was on “mega amounts” of pain medication for my body size. I made the appointment with the pain Dr. for just after Christmas this year, 2014. I also had an appointment for my regular 3 month check up with Dr. Bullach Jr., in early December, to get my scripts and talk to him. Only 2 days prior to my appointment, I received a letter in the mail. The letter was NOT from my Dr. Bullach Jr., but from the other Dr. who is the administrator of the medical center offices that I had been going to since 1986 actually! The letter stated that my Dr Bullach Jr. “was leaving on Dec 12, 2014 to go to another community and be an Urgent Care Dr.”! That was it!!! I had two days notice to tell me that a Dr. that I highly depended upon was leaving soon. I trusted him to help keep me as pain free as possible! He was the Dr. who told me to “depend on him only” and that he “was the eye in the middle of my storm”! I went to see him that last day and he said he would not write my prescriptions for the Narcotic pain meds that he’d been giving me and that he’d put me on for the past 9 years! What did he expect me to do? All I did during that whole entire visit, was to cry pretty much uncontrollably. I was frightened and I felt betrayed!! Once again by someone who I looked up to and trusted with my life! He just looked at me and sort of hugged me back when I hugged him “goodbye”. He did assure me that he “would send all of the info that was needed to that pain Dr for my appointment after Christmas. He also assured me that the other Dr. in that practice would give me the “exact same care and prescriptions and all of my medications”. He promised me that this other Dr. in the practice would take over my care and “take good care of me”. the M.A. even told me that if the other Dr didn’t write the prescriptions correctly or something was wrong or different, that she would “take him out into the hallway and tell him what to write and what to do for me”. I listened and tried to believe in them and in the Dr. I’d looked up to for so many years.
Well, I went to my pain Dr. appointment and found that a “bomb had been dropped on my treatment and care”. The “trusted” Dr. that I’d gone to for the last 14 years did not talk to the pain Dr….nor did he send him any records of any kind. If I had not brought all of my own records, the things that I did have, with me; the whole appointment would have been a sham. It pretty much was anyways. The pain Dr. told me that I do indeed have the many pain diagnosis to be on this kind of pain medication. He told me that the Federal guidelines people are not Physicians and they are not “pain people” and therefore they do not understand pain issues or the medications. But that he had to follow the federal guidelines and that I was on much too much medication. My Dr. had put my life at risk all of these years and I was “Not the only patient this was happening to”. He was pretty angry that he had to “take the fall out” from what Dr Bullach had done and then left his patients in the lurch to fend for themselves. I was left in the dark to fend for myself. The only alternative that I was given, was to go to a special Dr. in Ann Arbor, MI, who specializes in “detox”. Well, this was NOT ME! ????? I never smoked cigarettes, or pot. I never took drugs even aspirin for a headache was very rare for me. I didn’t drink and I was always a straight “A” student and really had never done anything “wrong” in my entire lifetime!
We got home and my husband first called the other Dr. in the office where Dr. Bullach, Jr. worked. HE was livid and I could hear him yelling over the phone to my husband. He was furious that he was “left with the mess that the other Dr left him with”. He was “getting rid of all of this other Dr’s patients”. He was furious for what he’d been left with, instead of being compassionate and worried for what I had been left with (and apparently others as well). There was no sound of compassion and not one ounce of empathy in his voice or his word choices. He and the pain Dr. decided to “pawn me off” to a detox Dr who has a horrible reputation if you went to “ratemymds.com” or “healthgrades” and others. He has 16 terrible, awful reviews and that is scary! THIS is NOT someone I would go and see…ME…who suffers from PTSD??? No way was I going to see that Dr.!!!! So my husband told this to the pain Dr & to the other GP in the practice where I had been going. They told him that I “dont have a choice” and that “I might die” and that I “had to go”. They told my husband that those reviews were written by “drug seekers” and “disgruntled pain patients”. Well, I just don’t think so because I looked up several other pain Dr’s including the one I was talking with and he and many others got wonderful reviews from “disgruntled pain patients” and so called “drug seekers”. Therefore this cannot be true! Lastly, the “detox” Dr. they wanted to send me to has a mission statement on his website and he has many pages of all of his awards and such! He wrote a story about how he “broke his foot and walked on it for 3 months. His wife finally forced him to go to an Orthopedic Dr. That Dr told him that when he walked North, his foot went “northwest”…..????!!!! He continued into this story telling the readers that “HE did this without a pain pill”. He was saying that if he could walk on a broken foot for 3 months and feel the pain of the “weather changes” in his foot, without any pain medications, then those who are suffering with “full body RSD/CRPS, Degenerative Disc Disease, Radiculopathy, Polyneuropathies, EDS, Rheumatoid and Osteoarthritis and more; should be able to do the same and live without any pain medications.” He said that most or all pain (cannot remember which word he chose so I will not quote on this one) is “perceived pain”. I will end it on that note.
It has been a week already. I will not be thrown into some “place” to have some brusk Dr. that I don’t know and do not trust, take away all of my control and my pain medication at the same time; while being away from my home, my comfortable atmosphere, my loving husband and my kitty cat. I can do this myself! I am doing this myself and I’ve gone down already quite a bit but I’m doing it slowly. I am a strong woman to have already beaten an eating disorder and the abuse that I’ve suffered in my lifetime. I am not crazy or bad or stupid. I am very smart and good and loving and a kind person. I don’t dwell on my pain and I do volunteer by sending kind and cheery letters to people in pain or going through terrible experiences. I do what I can to help my life be as good as it can be. I am the administrator of a support group for “invisible diseases” and we have over 850 people in our group. I know I can do this with the love of my husband and in my own home. But thank God I am strong and I am who I am because I feel terrible for the others. I found out that my old Dr., the one who left abruptly, had actually gotten into trouble for what he not only did to me but to several others. THAT is why he went to an Urgent Care in another city…and for no other reason. Please….if anyone has any good and kind advice, I will take all that I can get. Lastly, I saw my Neuro-Cardiologist this week. They told me that my upper left side RSD/CRPS has worsened because I now have Lymphoedema in my left (*worse) RSD/CRPS arm. They spoke to the Vascular Dr. (luckily my appt. was in the U of T. Medical Center/Heart & Vascular area, so a Vascular Dr. just happened to be nearby); and they gave me a prescription to order a special “compression sleeve” for that arm. The Dr. also informed me that my Atrial fibrillation has picked up, most likely due to the recent and pretty quick, drop in my pain meds. They also gave me a referral to a center in Lansing MI to get checked out for the new diagnosis of “EDS” or “Ehler Danlos Syndrome”, which they think I have because I do have 23 of the symptoms! I hope I can get an appointment in a timely manner. People with EDS do not metabolize pain medication like others do! Gee, now it’s all making more sense! But when I asked Dr. Bullach if I could possibly have EDS, he told me “no reason to get checked for it because there’s nothing they can do for it anyways”. But thats not true I’ve found out recently. Once again, I was lied to and betrayed by someone I trusted so completely. I also am making an appointment at a pain clinic where a friend of mine found. It is one in which the Dr. is compassionate or so it appears. I pray that something will happen quickly because when I went to the office that Dr. Bullach left, and saw the Dr. that I was told would “give me the same care, level of care and treatment plan”, I was given almost nothing after being on the medication for 12 years! I was left to either do what he says and go to that detox doc, the mean one with the bad reputation but who gets his name and photo in “Dr of the hour magazine” or to just fend for myself with no other help than my loving and kind husband. I will get through this and I will find a trusted Doctor once again…I just need one who wants a challenge and not one who just wants to put a “band aid” on me for everything and let me keep getting sicker and sicker right under his nose.
Thank you for reading. I appreciate any kind comments or responses or advice. But please, please be kind because I’ve honestly had enough abuse for one lifetime and more!
I thought my friends may want to read this. If you’ve seen it before, I’m sorry I repeated it again…but if you haven’t seen it before, it’s pretty awesome and I just wanted to share it with you !!
*(Author UNKNOWN adapted from the writings of Bek Oberin.).
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, Most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit, Some times I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things.
Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping.I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would?I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas.Some! times participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies.It also includes failure, which in and of itself can make me feel even lower.If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot.
Chronic pain is hard for you to understand unless you have had it.It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.