The Pain That Never Ends


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I married to get out of the house, when I was just 20 years old. That lasted 10 weeks and it was so terrible that I won’t even discuss that time period. Luckily that marriage was annulled and I moved away to another city to work at a school for the Deaf. I lived between my 2 aunts homes and got to work with Deaf children. I loved that job and I was also Interpreting for the Deaf at a great church. I got to participate in 2 drama groups that did sign language or “ASL” to songs and choreographed dance. I had a wonderful time during the year that I lived in Arizona. It was 1982-1983 and I celebrated my 21st birthday there and was part of a church youth group with wonderful friends.
I arrived home from Arizona and later met someone. We dated, got married and we were married for 8 years. We had 2 daughters, a dog and a beautiful home. I won’t belabor the story of how the Marriage ended because people can be hurt still today, from that “story”. I will say that I obtained help from a shelter and the Women’s Resource center. I moved out of our home a few months later when my older daughter finished kindergarten. Their father moved 1800 miles away and rarely saw them. I took care of them all by myself. I was the only person that was always there for them! Even if I had to leave my job in the middle of the day to be there for them and return to work afterwards; I would do that. So much has happened in my life. Most people would think that it’s horrific, but I soldiered on. I was almost completely alone but the three of us had each other. We were very lucky to have received some help from some very good people, churches and counselors.
When my oldest daughter was in 4th grade, I went on field trips and I took every chance possible to help out at the girls’ elementary school. I started a “Sign Language club” at their school, for a group of 4th and 5th graders. I taught 35 children some songs in Sign Language and did that for about 4 or 5 years. I love children and had so much fun interacting with them. I would teach fun songs in Sign Language and at the the end of the year we would have a show for the parents and the rest of the school. The “Silent Impressions Sign Language Club” was after school each Friday. I had that day off from my job and used it for volunteering in the classroom or at school and for teaching the Sign Language club. Towards the end of that year, my daughters’ teacher and I started to discuss meeting up for a coffee. He was a single dad and I was a single mom but we decided not to date until the school year was finished. Once we started dating we found that we were truly “soul-mates” and a little over a year later; we were married in the Wedding Chapel on Valentines day 1997.
One Saturday afternoon during the Summer of 2002, my husband and I were meandering & sipping lemonade at an outdoor Craft fair; while deciding where to go for dinner. The girls were with their friends and so we headed towards our town to a restaurant. As we were driving through a green light, a man ran through the red light and “t-boned” our mini Van with his SUV. I only remember a terrible burning smell after screaming “OH MY GOD”! The “lights went out” and I have vague memories of being in an ambulance and at a hospital and crying due to horrible pain. Luckily my husband was not hurt and a Police officer took him home to get our other car and our kids. I have no memory of the time without him being there with me.
I could not stand or barely move. My husband says that people were leaving the halls because my screams of pain were too hard for them to hear. My case was given to a trauma Dr. and I was admitted to the hospital. After 5 days my husband called my Neurologist (who I knew because of a Long thoracic nerve injury in 1999); and signed me out against medical advice. The weren’t doing anything for me. My husband told them that I was not acting like myself. I wet the bed and could not even stand to go to the bathroom. Instead of diagnosing me correctly with the TBI, that I later was finally diagnosed with; they sent up a Psych consult. They told us that I was “acting that way due to being abused”. My husband stayed with me the whole time and it was still a horrible experience. I left the hospital and that’s when questions started being answered. My then, G.P. and Neurologist helped get me the testing that was needed. I was found to have 2 torn rotator cuffs and multiple herniated/bulging lumbar and cervical discs. I had a torn Meniscus, sprained ankles and wrist. Also, I was diagnosed with Chiari I malformation, which I was born with but until the MVA, it was “sleeping”. Well, it awakened and I started having the worst migraines in the back of my neck and head. I could not hold my head by myself. My husband had to put me in a wheelchair with a yardstick behind my back and head with a pillow holding up my head. I couldn’t dress or undress myself or even go to the restroom alone. I couldn’t cut my own food or sleep in my bed. The insurance company sent a hospital bed for me to use or I slept in our recliner. I was in the most pain I’d ever known, outside of childbirth. The Physical Medicine & Rehab Dr. sent me for Neuro-Psych testing and I was found to have a TBI or “Traumatic Brain Injury”. The report said that my “short term memory was in the toilet”!! I went to a TBI Rehabilitation Center, daily from 9:00 am – 3:00 pm for 3 years. I had several different areas of nerve damage. It was discovered that I have a convergence insufficiency in my eyes and Moderate hearing loss in my ears. I needed Prisms on my glasses and 2 hearing aids. As I continued to faint nobody would help me or even listen. My husband knew something else was wrong and so did I. But to get Dr’s to listen when things are complicated and when so many things wrong; is very difficult. I saw a Neuro-Cardiologist because the TBI center sent me to him finally because of the fainting. I was diagnosed with Dysautonomia and POTS. I had Coronary spasms and a permanent pacemaker was placed. I ended up having 8 surgeries! I had visited so many shoulder Dr’s but none of them would listen to my issue regarding a “nerve zing” that went down my left arm from my left shoulder. One Dr. said to me “What part of “I can’t fix it, don’t you understand? Is it your brain injury?” OMG!! He was horrible and while I was walking out with my walker; the girls in his office looked horrified by what their boss had just said to me. I had several awful experiences with physicians, until one finally listened to me. It only takes ONE Dr. Folks! One to listen to you and help you. I ended up finding out that during that entire year that I was visiting shoulder Doctors; my biceps tendon had ruptured during the accident and it had grown onto the bone incorrectly. I had to have open shoulder surgery! They had to un-attach my Biceps tendon and reattach it with 2 screws. It was very painful.
I went through so much! Later, I had my 7th surgery, which was in 2007 on my right foot. It was the start of another nightmare! I was told that it would be a 30 minute surgery. I had been put on Coumadin, a blood thinner; due to having a heart attack in 2005. Following that Heart attack, I was diagnosed with Atrial fibrillation. After that, in 2006, I suffered a CVA or stroke. The surgeon didn’t want to take me off of the Coumadin and so she put a blood pressure cuff around my ankle to stop blood flow to the right foot. The surgeon came out and told my husband after 90 minutes, that “once inside, the foot was much more gnarly” than she originally had thought. It took much longer than expected and there was no blood going into my foot during that time. Five days after my surgery, I was hobbling along in our kitchen and suddenly a big golfball sized lump popped out of my ankle and was purple, black and blue instantly! It felt like knives sticking in my ankle and I was writhing in pain. My husband took me to the E. R. but nobody wanted to help me. I sat there crying in so much pain while they “were waiting for another ambulance to come for the girl in the next bed who was “stable”. I was crushed again that no one would help me. We paged the Dr. who did the surgery and left the E. R.! She told us to meet her at the surgery center the next morning. I had to make it through the night like that! It was so much pain! She said that the “synovial joint sac had burst over my ankle joint “ and that is why it was so painful! She gave me Fentanyl Lollipops and told me to take them until the swelling could go down. That would take time & then the pain would lessen, slowly. I went for my 6 week check up and told her that the pain was worse than before I started. She told me that I had “a little RSD” and gave me some “Lyrica” I waited and things got worse and the Lyrica was horrible with nasty side effects. It did nothing but make things worse for me. I went to another Orthopedic Dr. and got a 2nd opinion. He walked by the room and said that my foot looked like “classic RSD” and he sent me directly to a pain clinic.
Prior to that MVA, I had only known the pain of abuse, and non physical types of pain. Childbirth was painful because I had 2 C-sections. The second time was a C-section after 43 hours of labor! But it was worth it because I got to have a beautiful baby both times! Also, there was an end to the pain of labor! There is no end to my current pain. The CRPS or “RSD” has gone systemic or full body since my 2nd pacemaker placement in 2013. Everything that could go wrong, has gone wrong. Mostly, because Dr.’s would not listen or had a preconceived notion of me and who I am. But I am strong! I am a survivor and it’s time to listen to me! I’m fighting for the pain patients and I won’t give up.img_3995

Finding HOPE With Chronic Pain



At first, I had been off of work for awhile and on SSDI for PTSD and CKDII. This was after years of living with abuse, domestic violence and more abuse. I got the help that I needed and was going to try and return back to my job in the Fall of 2002. A man ran through a red light one August day in 2002 which changed all of my plans, hopes and dreams. At first I lived with Chronic Intractable Pain s/p the M.V.A. I suffered multiple injuries. Some of these included: a TBI with 3 years of brain injury rehabilitation (and whiplash), multiple herniated/bulging discs, nerve hearing loss, balance/vision loss/issues, a ruptured biceps tendon, 2 torn meniscus’ along with ankle and wrist injuries. I had 4 CT Arthrograms, which are grueling and painful tests rarely used today. They aren’t often done now because all of the new technology and MRI machines. But I had a pacemaker placed 3 months after the accident and can’t have anymore MRI’s (luckily I had the brain, neck, spine & shoulder ones done right away after the MVA). I endured 8 surgeries with 2 titanium screws in my left shoulder, and I’m on my 2nd pacemaker. In 2007, following right foot surgery, I was diagnosed with RSD/CRPS in my right foot. Later in 2013, I was diagnosed with “severe systemic/full body RSD/CRPS disseminated” with Lymphedema in my left arm, chest, breast. This occurred after what was supposed to be a simple pacemaker replacement surgery. Instead, when the Neuro-Cardiologist surgeon got inside of my chest, he found that my pectoral muscle had a hole worn right through it from the first pacemaker placement. What was supposed to be an easy 45 minute procedure turned out to be a major reconstruction of my entire pectoral muscle and more.

Pain has affected my life tremendously because I had been a full-time working single mother with two daughters for 9 years. I was an Interpreter for the Deaf at a major University hospital and for several school systems magnet hearing impaired programs. I had gone to College for Sign Language Studies/Interpreting and had received honors. Finally I found my soul-mate, fell in love and re-married. We had only been married 5 years when the car accident occurred, which changed my life forever. We used to win medals in “racewalking” together. For several years I had been an Aerobics instructor. At my daughters school and other elementary schools I volunteered by teaching children about Deaf culture and American Sign Language. For four years I taught Sign language class to the 4th and 5th grade children at my daughters’ school. The kids learned several songs in Sign Language and we finished off the end of the year by performing them for the whole school and the parents. Lastly, I volunteered to chaperone whenever possible and I was the jump rope team coach for several years. Receiving the honor of the “VIP” (*Volunteer In Public Schools) award from our school systems’ Superintendent was an awesome feeling. The award was given to me because of my work with the children and for volunteering my time to Interpret for Deaf parents with hearing students during IEP’s and Parent/teacher conferences. I was thrilled to be honored in our town Newspaper!

In seeking treatments, I was in brain injury rehab for 3 years outpatient and had found a pain management physician. He started out with the usual Epidural nerve blocks, trigger point injections, Pain Psychologist with biofeedback and 8 years of PT and OT. Multiple specialists were visited and it was a different one for each injury. I’d gone to at least 5 different shoulder Orthopedic Dr’s and none of them helped me. It was always more grueling Physical therapy and more pain. One of them even said to me “What part of I can’t fix your shoulder, don’t you understand? Is it the brain injury?” Feeling devastated, embarrassed and defeated at that moment, my driver took me home. (*I had a driving company take me to most of my appointments for several years because my husband couldn’t get the time off needed for everything). I had several experiences with physicians, that were just appalling. One G.I. Dr., said to my husband “Wow, you got way more than you bargained for, marrying this one, and you even stayed?” A knee Dr. told me that “everyone my age has a torn meniscus”. I think I could write a book just on terrible experiences I’ve had with physicians. But you know what? I didn’t give up! I continued to go to 5 different shoulder physicians, until finally one touched my arm in such a way that I screamed instantly. He knew then that my biceps tendon had ruptured a whole year prior! He said it had ruptured and then during all of that year while I was visiting shoulder Dr. after shoulder Dr.; the tendon had been trying to repair itself by reattaching wrongly to the bone. I had to have open shoulder surgery to detach that tendon from the bone and then reattach it with 2 titanium screws.

I feel that part of the barrier to my getting the care that I needed was that I “looked fine”. I suppose that because I tried to brush my hair, put on a bit of makeup and wear clean clothes, that meant that I was “fine”. Though I was prescribed per the PMR physician: 2 AFO’s (ankle/foot Orthotic braces for foot drop), knee braces, a shoulder brace, a wheelchair, motorized scooter, a walker, forearm crutches and a cane; I supposed I still “looked fine”!?? Along with the fact that I’d been prescribed prisms for my glasses (which I’d not worn prior to the MVA) and 2 hearing aids for the moderate hearing loss. My husband and friends, or for that matter anyone who knew me could see that I was in horrible pain. It seemed that many of the Dr.’s were oblivious. Luckily, my GP of many years, the PMR brain injury specialist and the pain management physician knew, understood and helped me and that is what mattered most at the time. I even had one person put a nasty note on my car windshield when I went into the grocery store. I had put the HC placard on my rear view mirror and put my cane into a nearby cart. I went into the store for just something small and came back out to a note that I’ll never forget. It was written on a napkin with purple ink and it said “You don’t look Handicapped or sick. It must be a MENTAL thing! I hope you become handicapped for the rest of your life so you know what it is like to really need this spot to park your car”! I was in shock and devastated. I cried all the way home. Then after composing myself, I wrote a letter to the editor of my town and told him all about my experience. I was hoping to help others to know they weren’t alone. I was also hoping that the person who wrote the note, maybe lived in this town and hopefully saw my “letter to the editor” and maybe they would feel some remorse?

I had a pain management Dr. and after doing all that he asked, he wanted to give me a spinal pain pump. I was not a candidate because I have an immune disease called “CID” or Combined Immune Deficiency Disease. He said since I was going to be given only medications, that he wouldn’t see me anymore because “he is looked at under a microscope by the government”. Therefore he turned my pain care over to my GP and told me that the Dr. could call him any time with a consult or questions. The GP did not know what to do with me and gave me a higher dose of pain medicine after pain medicine, which most made me ill. Finally we found something that worked and helped the pain. I was on 2 medications from 2005 thru 2015. Then in January of that year I got a letter from our insurance company stating that they “would not pay for the pain meds anymore after March 11th, unless a certified pain management Dr. agreed with the regimen I was on.” I thought that would be easy, I would just visit my old pain management Dr. and all would be fine. That was not to happen! I went to my GP for my next visit to discuss this letter and what we would do, only to find out it was his last day! I spent the majority of the appointment crying. He promised me that he would speak to that pain Dr. I’d gone to before and send him all of my updated records. He also told me that he would personally speak to that Dr.! We went to the pain specialist that had been my prior pain specialist. I had always been a good, compliant patient. I did everything asked of me. I fought taking pain medications but was told that “it was OK” and to “trust him”. I even had a letter from his own pain Psychologist, stating that I do not have an “addictive personality”. Well, I was astonished to find that he turned me away and told me to “go to a treatment center”! I fell apart and started to cry! Then he told me that my GP had been “investigated by the feds and he was sent to work at an urgent care where he cannot write prescriptions for pain meds any longer”. Then he proceeded to tell my husband and me that “he didn’t want to be any part of that Dr’s MESS”. He told me he would not see me again. I begged him and told him I was a strong person. I reminded him about the letter from his own pain psych. Dr.! I reminded him that I’ve never smoked a cigarette, never drank nor have I ever done any drugs in my whole life! He told me to leave and come and see him “only after I visit and go to a treatment center”. What is wrong with this picture? The problem is that this man is supposed to be a legitimate pain physician. He should know the difference between “dependent” and “addicted”. I don’t get a “high” from my medicine, in fact I despise taking it. I don’t think about it or crave it. If I had a choice, I would never want to take it again!

I never went back to that Dr.! Needless to say, I never went to the treatment center. I didn’t want that following me around in my medical records for the rest of my life. I didn’t want to be taken less seriously than I had been already, because I “look fine”. I went to about 4 or 5 different pain specialist’s who all looked at me dumbfounded or made rude comments to my husband and/or me! Some of them just stood by the door waiting for me to be done with my “story”, so they could say “Ok, well I’ll see you in 6 months”! A few of them said that I was “just too complicated” or had “too many pain issues to deal with”. Finally, I saw one Dr. that was kind, good and respectful towards me. That’s all it takes, folks! It only takes one kind Dr. to listen to you, believe in you and then you believe in him/her. He told me that I had to get off the medications that the other GP had me taking for 9 years. He gave me a different medicine and he told me that hopefully my brain would “be tricked” by the other pain medicine and the withdrawals wouldn’t be too bad. Even though I’d had seizures following the TBI, a heart attack and a CVA already; I wanted to do this at home with my husband’s love and help. I was told to take my last of the old meds on July 12, 2015 and start the new one. I was deathly ill for about 6 weeks. The first 3 weeks were the worst. It felt as though I had the worst flu in my entire life, on top of the flaring of the RSD/CRPS pain and other pain. Finally, I had done it! I had a few blood pressure spikes that were scary and we got some medication to help with that. I earned the respect of the new pain Dr. and I felt some sort of self strength from being able to do it all by myself, for the most part. Today, over a year has gone by and I don’t think about that other medication and I don’t want it. I never want it again actually. If someone offered it to me today, I would say “NO”! My quality of life has gone down a bit. I’m in my chair for most of the days, with about 4 “good hours” per day. But I still prefer this pain medicine regimen that I’m taking now! It works for me and it’s still pain medication but its more than half of what I’d been taking and I feel like my pain is semi-controlled as long as I don’t do too much for too long.

As far as distractions, that is what I want to talk about. There are so many good things that we can do to distract ourselves if we only give several things a chance. I started volunteering as a “chemo-angel”, a “card-angel”, “special assignment angel” and “prayer angel” for the “Chemo-Angels” program. What this essentially means is that I get assigned a “buddy”, someone compatible that I would work well with. It’s usually a child, because I love children and I’m a mom of 2 and grandmother of 3! The child is going through chemo therapy and I send them weekly letters, small gifts that are mail-able and cards. When I get assigned children, I use my kitty cat “Angel Kitty Luna” as the writer of the letters. The kids love to hear about Luna running through the house catching spiders in the basement or playing with her “baby” (her 1st toy). They end up loving my Luna so much, that I made her a Facebook “page” and many come to “visit” her there. There they can see videos of her and see that she is real. It’s good and therapeutic for me and it’s very good for the children or adults that I am assigned to be buddies with. I cannot say enough good about distractions. You are helping yourself when you help someone else. As far as the chemo-angel program, I’m never allowed to say a negative word in my letters and nothing about myself, unless its a fun story or something cheerful. I also took my love of Sign Language and changed it from Interpreting which I can no longer do, into signing songs that are uplifting and fun and posting them to You Tube (*@ASLSuzyQ), which I can do. It makes me hurt more sometimes and I must learn the lyrics first. It’s really very difficult for me but it’s a challenge too. You see, with the TBI it’s very hard to memorize and nearly impossible. With my pain levels, and lack of “range of motion”, it’s nearly impossible to actually DO the sign language. I go over and over and learn a song (because it’s very hard to hear words with music when you need 2 hearing aids). I sing it and learn it until it’s “2nd nature”. Then I videotape myself doing ASL covers of fun, meaningful and cheerful songs. I post them to You Tube and then send them to my few Twitter accounts, my 3 support groups on Facebook which I founded myself and admin. by myself (though the one group is pretty large and I have 2 helpers for that group). I also send them when appropriate, to my Facebook “Pages” which I started in order to help with different aspects of Advocacy and to cheer people up. Another one of my favorite “distractions” from my pain, is my blog and writing. I took journalism in College and I always wrote for my school newspapers. I even founded a newspaper at the University of Michigan hospital, where I worked before I got sick. I love writing and my blog called “Tears of Truth” ( @suzydukettes.wordpress.com), has become more recognized and noticed. It started out as a place for me to write about the abuse and an outlet for me, before I had physical pain to deal with. It has progressed and evolved into a place where I write everything from funny stories to informative articles and my opinions regarding them. “Tears of Truth” is also a place where I can have my own “soapbox” about certain issues that I want to challenge. I even have ways to cope and what to do when you are in a situation with a Narcissists! I write during the holidays about how to cope with pain, people and pumpkin pie! I used my bad experiences and my good ones to help others. I even wrote about the day that someone in Wal-mart stopped me in a public store and wanted to “pray over me because I needed a cane and therefore had demons inside of me”! Now, don’t get me wrong, I love God and I’m a Christian! But I don’t appreciate being told that I am in pain because I’m a “bad person”! I try to write about these and other experiences. I find ways to help others should they come across something like that. I just love writing, music and ASL and I use all of that to help distract me from my pain. I have another You Tube account (*www.youtube.com/suzydukettes), where I post videos sometimes about certain issues, such as that “Anderson Cooper’s CNN Town Hall meeting” and the proposed “Opioid Lifeboat tax” and the USPain Foundation’s “People With Pain Matter”. I helped a group of University students with a project they had to do. They had to find something unknown to most people and make others aware of it. They saw the “CRPS” logo sweatshirt I was wearing while in a coffee shop. They stopped and asked me if I would help them with their project. I had so much fun helping them. I made videos, slideshows and we raised awareness about not only CRPS, but all about Chronic Pain! By then I was in process of becoming an Ambassador in MI, for USPain Foundation. I brought my pamphlets and other resources sent to me by USPain and we spread awareness of both CRPS and Chronic Pain.

I do envision a better and lower pain future for myself and anyone else who wants to “come along for the ride”. I can envision that future even more now because though I started out “alone” or felt “alone” on this pain journey. I now have thousands of people who share their stories with me each day from all over the world. I have made so many wonderful, deep, meaningful and strong friendships along the way. We all have to start with “baby steps”. When things feel too big or too much to handle, not only do I turn to God, but I have my loving husband/caregiver and my dear friends from all around the Globe. I’ve learned so much and I pray that I will continue to learn every day. Today I am better equipped to handle this pain because I didn’t give up HOPE. You never know what “good” could be around the corner. So please don’t ever give up! I just try to distract myself, take my medicine responsibly and use the tools that I’ve learned. This is the way I hope to continue coping and to become a better person and health advocate.

Withdrawals And One Week Fentanyl Lollipop Free !!


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Hello Luvs,

Wow…One week has passed….and I have been free of the Fentanyl Lollipops for 7 days now!

I would say that growing up in an abusive home was horrendous. Being robbed at gunpoint at the age of 11 years; in a shoe store with my family, was just terrifying. I also think that  getting married, being abused and getting remarried all the while being abused even worse, was pretty challenging. I didn’t know what “challenging” was though, until I had to flee the marital home with my two baby girls; along with help from the domestic violence shelters. My little girls  were only 3 and 5 1/2 and I was 30 years old. Later I was diagnosed with PTSD and “Battered Woman’s Syndrome” and found some solace in trusted Psychologist whom I still know to this day. I had felt that battling Anorexia & depression on and off since the age of 17 until I cured myself following a horrible motor vehicle accident in 2002; was brave and courageous. Having gone through Acute renal failure, being robbed again in 2013 and being involved in 2 Motor vehicle accidents, through no fault of my own, I thought I didn’t exactly have such an “easy” life. The second MVA in 2002, I suffered numerous injuries and multiple surgeries; including several pieces of hardware placed in a few different parts of my body. I’m on my second pacemaker, the first being “a piece of cake”. Meaning that the second pacemaker surgery in 2013, did not go quite as planned. After getting into my chest, the Neuro-Cardiologist found out that the 1st pacemaker had worn a hole right through my pectoral muscle. Then not only did I need a new pacemaker, but the 45 minute to an hour surgery turned into a 3 hour ordeal in which my whole left pectoral muscle had to be rebuilt. The team was smart and did research on RSD/CRPS, a Neuro-autoimmune disease that I ended up getting after my 7th surgery.  It was the surgery on my right foot in 2007, in which the horribly painful nerve disease started. It spread and it spread until it went systemic following that major open surgery in 2013. I even endured a CVA and a mild heart attack in between the 10 surgeries following that MVA in 2002. I suffer from an MTBI (mild traumatic brain injury) and went through 3 years of TBI rehabilitation to learn how to cope with:  not being able to cook when nobody is home (because I may leave burners on and hurt my family or myself), not being able to comprehend what I read anymore after having been a College graduate with a 3.9 GPA! I had to learn how to live with leg braces, hearing aids, special prism glasses, balance issues, much less concentration capabilities and just about zero short term memory!  The worst of these being the chronic nerve pain and all of the pain following those years and still to this day.

I went to a pain Dr. for 3 years and he did everything from epidural nerve blocks to trigger point injections and biofeedback along with pain Psychology appointments. I was so happy when I read the notes from the pain Psychologist’s because they wrote that I was not an “addictive personality”. I never drank, smoked, did any drugs….prescription or otherwise! I was one of those “good girls” who had always tried to be “teachers pet” and get a 4.0 GPA and still try to get “extra credit”. Of course I’m a “type A” personality person who likes to do things the right way the first time if at all possible. I always did my best at everything I endeavored. I made alot of mistakes but always came back and tried again, while pulling up myself by the “bootstraps”.

The chronic intractable pain that has gone along with all of my injuries and surgeries since 2002 and then the diagnosis of CRPS in 2007; and later the shock of getting the “full body/systemic CRPS” has been traumatic to say the least. I was always very cooperative and followed whatever the Dr’s told me to do. I trusted again and again and again; when most people would’ve given up long ago, I just kept believing in the “goodness” of people or at least trying to find some good in all people. If you’ve been following along at all, you’ll know that I met Dr. Bullach, my GP for 12 years, in 2002 during a hospital stay following that MVA.  I was in there for pain control and met the pain Dr at the same time. I trusted him right away and thought he was a kind and “teddy bear-ish” type of personality.  He told me that I “could trust him” and that “he would be the eye in the middle of my storm”. He said he would help me and cooridinate specialists and take care of all of my medications etc. He told me “not to worry”.  We tried every medication under the sun, it seemed.  Everything either made me deathly ill, very sick or I was allergic to it! By the time we were finished and had found one thing that finally worked for my kind of pain, there was something of a “book” of all the meds that I had tried and which had failed for me.

Finally, I tried the Fentanyl patches and they made me nauseous and really “loopy”. I went ahead and tried them again because I just felt that a patch was so easy and you didn’t have to think about it all the time, many times per day etc. It finally helped to relieve my pain. I had a hospital bed in my home because I couldn’t even get in and out of bed or get any sleep due to the amount of pain I was living with at the time. I had been offered a “pain pump” that they fill with morphine, by the pain Dr. ….but the auto insurance was fighting me so much and I just didn’t have a whole lot of “fight” left at that time. I also already had 2 screws in my right shoulder, a jaw implant and had a pacemaker! I didn’t want anymore “things” put into my body. Especially not something with a catheter that would’ve been stuck into my spine that had multiple herniates and bulging disks, degenerative disk disease and Scoliosis.  Luckily I didn’t get the pain pump because later we found out that I suffer from Hypogammaglobulinemia, a blood disease that means I have an immune deficiency in my IGG, IGA subsets of white blood cells. I could have become paralyzed and could have gotten numerous infections had I allowed that pump to be placed. I made the right decision for me and today I’m so glad that I did.

So I had been in a “pain pump” support group, just to find out information for myself about the pumps and to make friends with the same kind of pain issues that I suffer from. Everyone was so kind and many were knowledgeable. Some of the people mentioned these “pain lollipops”. They said that they helped a lot and very quickly for the terrible nerve pain. I checked in with my GP, Dr. Bullach about them and he started me on them right away. That was in 2005, after I’d finished treatment with the pain Dr.and he’d put me back in the hands of my GP.  He told me that because I didn’t want a pain pump and I was going to go the medication route for my pain, that it’d be better for me to be in the care of my GP. He agreed that Dr. Bullach would prescribe the pain meds. He told me that my Dr. could consult with him at any time and he would help.  He also agreed that it was better for him this way because he was “looked at under a microscope” and didn’t like prescribing pain meds.

These experiences were all difficult, painful, scarey and life altering; but nothing prepared me for what I’ve gone through this past week with the withdrawals from the Fentanyl lollipops.  I’d been prescribed them and had been taking these for the past 10 or 11 years! Time just kept passing and the regimen was working; although I asked many many times over especially the past 3 years to get taken “way down” from the amount I’d been taking of the pain suckers. Dr. Bullach just kept on telling me to “trust him” and that he “was the eye in the middle of my storm”.  He told me that he’d “gotten me out of that hospital bed in my home”!  He reminded me that I was able to at least get out and do a little bit more than I had been before the lollipops. So I trusted him; though I still continued to ask him to slowly take me down because I felt that I was falling so often (6 times in 2014 and 6 concussions!!!) and though I have balance issues, I thought in the back of my head that maybe it was partially the fault of the meds? I never even took an Aspirin for headaches in the past, prior to this car accident and the injuries from it. Now I was wearing 2 patches of Fentanyl and taking sometimes approximately up to 20 or + lollipops daily to control my CRPS and the other pain issues. I had even woken a “sleeping monster” in that MVA in 2002! I had been born with “Arnold Chiari I malformation”. It showed up on the MRI after the MVA. It is a congenital defect in which the tonsils at the base of my brain stem get swollen and do not fit correctly into the spinal cord column, causing great pain for some people and others never know they have it! It all depends on many issues and variations. The horrible whiplash being my 2nd one and then the MTBI, “woke up” the sleeping congenital defect. Hence, another horrible pain issue to where I cannot even hold my head up for long periods of time without causing great pain.

So as you’ve probably been reading my past few posts, you know that my GP just abruptly left in December 2014. Without any feeling, caring or the tenderness I’d seen before in his eyes; he just told me he was leaving and that that appointment would be my last one with him. He promised he’d talk to the pain Dr. that knew me. He assured me that my treatment would be and stay the same as it had been because it was working! He promised also to send my records to the pain Dr and to personally talk to him on my behalf. I had received a letter from my health insurance company, stating that they “would no longer pay for the Fentanyl lollipops for pain after March 11, 2015, unless a pain Dr. agreed with Dr. Bullach’s treatment plan.” He told me not to worry about a thing and again to “trust him”. Well, as you know, none of that ever happened and the Dr. who took over for Dr. Bullach’s patients got left with a “mess”. He could not handle the volume of patients on top of his own, especially the amount of “pain patients” that Dr. B. had accumulated!! Luckily for me, I’d been a patient in that office since 1986, and had a history with that other Dr. as well. He reluctantly helped me get the pain lollipops and patches, but was swift to inform me that he was not going to be prescribing the amount that I’d been taking under the other Dr.

I was afraid, but I was motivated. I have been through so much, but it has made me a strong woman and a survivor. I took myself down from 20+ suckers daily down to only 8 in just a couple of months time. I cut my amount of the patches in half as well. I went through some hyperalgesia and some misery, but I did it! I was taking less and less as I was looking for a pain Dr. to help because the other physician in that practice didn’t feel comfortable prescribing the kind of pain meds that I needed to survive now, with all of the pain that I live with on a daily basis.

Finally, I found a nice pain Dr. and luckily I carry my records with me when I go to a new specialist. I had everything in order and I felt “safe” with him right away. He told me to finish up the pack of pain lollipops that I was taking and then  go to sleep on July 12th taking one last sucker. Then I was to wake up on the 13th of July, and never take another Fentanyl lollipop again; after 10 or 11 years of taking them, it was over! I was starting a new pain management regimen and I was fearful, but knew I could do it!  The first day was not so bad until the night time. I did crave the mental picture of having something that my brain associated with immediate pain relief!  I felt nauseous, achy all over and I was so hot, I thought I was going to spontaneously combust!! Then I’d get chills, diarrhea and started to vomit. I felt jittery and anxious and didn’t want to do anything but cry and sleep and lay on the couch! I made a video of how I was feeling at 5:00am on the 2nd day. The second day was more of the same and the third day was the worst! I did manage to go with my husband, daughter,& my 2 granddaughters to an hour or so of the kids “music in the park Wednesdays” Summer program.on the third day.  I returned home sicker than ever afterwards!  Finally, I started researching on forums and “You Tube” etc. I learned that if I took a medication called “Clonadine” aka “Catapress”, it can sometimes help with the withdrawals. I called the GP and within an hour an half, I had the Catapress in my body. It was the first thing that actually took a little bit of the edge off from the withdrawal symptoms.

The pain Dr. didn’t seem to think I’d have too much or too many symptoms because he said we were “faking out my body” by switching to a different BT pain medication….something  more safe and not made for “end of life” and “terminal” patients.with Cancer.  He told me that the pain lollipops were/are dangerous, “very dangerous”. He said that I should never have had them. So I’m not sure why my body still went through horrible withdrawals, maybe because of my many bad pain issues?  But I felt like I just was going to die and really didn’t care if I had, at that point! I’m so lucky that my husband is a teacher and he was home for me. Also, my oldest daughter lives nearby and she was a great help and has been. She even was calling several times daily and was stopping over to bring me some “Gator aide” to help my electrolytes along with my favorite food, “french fries”, to get me to eat something substantial!

Well, today it is one week and I am Fentanyl lollipop free. I’m very proud of myself for doing this without having to go anyplace and get help elsewhere. I was afraid because I had a previous heart attack and stroke and I’d had seizures following the MVA for about 6 months. All of those things can happen when going through withdrawals. I’m so very lucky that these things didn’t happen again. I don’t feel good yet. I feel very tired, heavy and I still have stomach aches and diarrhea, along with nausea and depression on and off. I think I’m over the “hump” or the worst of it. I think I will get just a little bit better each day. It’s going to be very very hard because for over 10 years I had a “quick” relief when I was on an outing or needed quick breakthrough pain relief.I have to retrain my brain and myself to just plan ahead and take what the pain Dr has prescribed for me now, about 45 minutes before I may need it. That’s not going to be easy and the new meds are feeling like they’re ripping out my tummy. People tell me that is the withdrawals and not the meds. I’m willing to see this through and keep on keeping on!

Thank you for allowing me to share my journey with you and I will certainly be keeping you posted. Thank you again…..Also, if you would like to watch my very dark (because it was middle of the night with no lights on and I was crying very much) “You Tube” videos, please email me for the link and I will give it to you. I have them not ‘private” but “unlisted” …so if you have the link from me, you will be able to watch them. There are three videos altogether right now for this experience thus far. Again, my email is: jewelrymkr@aol.com…..g’nite luvs….

willsTrue Colors:  Seeing Is Believing.....sins

Doctors Are Only Human….


I have been to too many Dr’s since my auto accident of 2002. I have had my share of good and kind, helpful men of medicine. But then I also have had more than my fair share of mean and inhumane and insensitive medical and osteopathic physicians. I suffered a brain injury in that car accident and had to go into brain injury rehab for 3 years following. I have a terrible short term memory, when I once had memorized my full address book! I had a photographic memory in which I could look at something and study it as if studying for a test. Later I could recall that image in my mind. Now I can’t do either! My cerebellum is injured and will not get better. I love to write and as for reading, I have to read, re-read and re-read. I then get frustrated and go back to re-read again and then maybe even another time. Finally, I may retain the “idea” of something in a book or an article, but that’s as much as I can retain now for later recall. I am only telling you that because I do remember how awful I felt after leaving a shoulder orthopedic Dr’s office in 2003, after that MVA. I had been to visit several shoulder Doc’s by then…and knee Dr’s and heart Dr’s and so on. I had yet to visit the Cleveland clinic but that was to come later on. This shoulder Dr. said to me “What part of “I CAN’T HELP YOU, DONT YOU UNDERSTAND? Is it the brain injury or what?” Oh My Gosh! I was mortified as was his office staff. I left in tears with the man from the driving company, who transported me that day, also flabbergasted by this Dr’s words. That man was definitely NOT a Healer. I’ve had many more of those awful things happen to me in many different Dr’s offices. But I didn’t give up or lose hope. I kept going until I finally found someone to listen to me. Someone who didn’t want to blame everything on the abuse issues I suffer. I found a shoulder Dr. who sent me to the Cleveland clinic and they agreed with his diagnosis. They had thought they might do a “cadaver muscle / nerve transfer” surgery. But then they felt that I had too many other pain areas and that would be a huge, major surgery along with only fixing one small pain issue. I was sent back to the kind shoulder Dr. in Michigan, Dr. Jeff and he listened to me and touched my shoulder in a certain way. He knew right away that I had besides 2 torn rotator cuffs, a ruptured biceps tendon. It had ruptured a year earlier in that car accident but nobody would listen to me. I had so much pain and so many issues that I was “poo poo’ed” by many health professionals; until I finally found a great team that has been helping me. Dr Jeff did a surgery to detach the ruptured biceps tendon from the bone and reattach it with 2 screws. It fixed the nerve “zings” and though it was a painful surgery after 2 frozen shoulders/adhesive capsulitis for a year and 2 torn rotator cuffs. Soooooooo…….
I just happened to be on “LinkedIn” very very early today. I could not sleep. Something was drawing me to this place I hardly ever visit. I mean…I’m in pain…I am unable to work. I do what I can to try and help others and selfishly that makes me feel just a little bit better. I am in pain 24/7 and to others, I “look good”. People tell me that I “look fine” and that I “look young” and that does feel good. Though at times it makes me feel less cared about and less listened to. I feel judged sometimes and if I complain too much, people don’t want to be around me. Even if I don’t really complain at all, God forbid that I answer that question that just about everyone asks when they run into us someplace “How are you?” Well, my friends….you are damned if you answer that and damned if you don’t answer it. You may talk too long, too deep, or not enough. You just cannot please everyone so please …please yourself. Say what you need to say and to only those that you trust. No sense going into a long history of your issues with people who don’t care or who may try to hurt you with it later on, right? I mean, even those that we love or those that we hope love us back, they get tired too. I can’t say that I blame them as I grew up with an ill mother. She was in and out of the hospitals all of my life. The ambulances came into our house since I was a tot in the ‘onsie’ pJ’s, rubbing my eyes in the middle of the night when strangers with gurneys were taking my mommy away and telling me to “get out of the way”.
So this morning I was reading and I found this blog here on WordPress . It is called “Musings of The Distractible Mind” by Dr Rob Lamberts, LLC. It was an awesome article or post. I subscribed to his blog and now I want to share it with you. I give him all credits for this post as I have copied and pasted what he wrote for you to read because it’s awesome and I think it will help my readers. Mostly because many of my readers are chronic pain patients. Some with RSD/CRPS, like me; and others with various other pain issues and a wide range of medical problems. I admire this Dr’s writings and I am not copying his work as my own, only posting it here to share it with you because it’s awesome. I give you his name and the name of his blog and the name of this blog post. I pray that he is flattered, but if he does get upset, I will do whatever he wishes. I only hope that it will reach and help many people. Here is HIS blog post from July 2014:

Dr’s Are Not Healers

It’s a seductive idea. We doctors possess knowledge and experience which can not only help people, but can save their lives. We get opportunities to be the right person at the right time to offer the right help that makes all of the difference. It’s one of the greatest things about our profession. It’s also one of its greatest traps.

I’ve heard many doctors refer to themselves as “healers,” as if we have some special power to bring about healing in our patients. This idea confers some sort of a higher status and originates, to some, from a “higher calling” to a more noble life. Again, this is a logical step, in that we have opportunities on a regular basis to help and even save the lives of people. It’s natural to believe that somehow the healing power comes from our touch, or even from our knowledge.

It doesn’t. I am not a healer.

Healing is what the patient does, not the doctor. As a physician, I am certainly one who can help the patient find a faster road to healing, but I don’t heal. I help.

Why am I taking the time to talk about this? Why get stressed out over whether I am a helper or a healer? I think that the belief in doctors as healers causes significant harm to both doctors and patients, and that getting a better perspective about the roles of each will greatly improve the care given. Here’s why I believe this is a topic that needs addressing:

1. DOCTORS OFTEN FAIL AT HEALING (AND WILL ALWAYS ULTIMATELY FAIL)

There are many patient problems that do not get better, despite my best efforts. There are countless pains I can’t remove, and many problems I do not solve. Even when I succeed, the success is always temporary, as a new problem will eventually come back. And if healing is our ultimate goal as physicians, we all are total failures, as all of our patients eventually die. If healing is held as our goal, we fight a losing battle. We are the soldiers in the Alamo, offering impotent resistance to an overwhelming force.

If I believe in myself as a healer, I will face constant disappointment and defeat.

2. WHEN HEALING OCCURS, IT IS OFTEN INDEPENDENT OF DOCTORS

My patient may follow my advice and not get better, or may disregard what I say and recover from their problem. My direction is imprecise and imperfect, based on my knowledge and experience along with what I believe to be happening with the patient. But my experience and knowledge may not be right, and my interpretation of what is happening with the patient may be inaccurate. Healing is something that happens in the patient’s body. It’s when they get better, whether or not I am involved in the process.

Belief in myself as a healer is based on a falsely high opinion of my knowledge and abilities.

3. PATIENTS WHO SEE DOCTORS AS HEALERS WILL EXPECT TOO MUCH

I’ve seen it. I’ve heard people’s frustration when I’ve told them I can’t fix their problem or remove their pain. They feel like they shouldn’t have to hurt, or that if there is something wrong it’s because I’ve missed something. These are the folks who buy the “miracle” cures pandered by Dr. Oz and other profiteers. They hear the promises of health and wellness from the media and are disappointed when we can’t offer the same.

By believing I am a healer, my patients will eventually be frustrated and disappointed.

4. DOCTORS WHO TRY TO BE HEALERS DO HARM TO THEIR PATIENTS

The pressure to find the “magic bullet,” or the unifying diagnosis leads many doctors to practice bad medicine. This is a pressure we all feel when faced with the powerless feeling some patients bring. This leads to the ordering of unnecessary tests, performing of unnecessary procedures, and prescription of medications that should not be given. I believe this is what drives many doctors to overly-prescribe narcotic pain medications and other addictive drugs. We don’t want to stand helpless; we want to do something.

To protect my role as a healer, I am drawn away from my training and toward the task of finding a miracle. In doing this I can cause significant harm.

5. TO PROTECT THEIR STATUS AS HEALERS, DOCTORS WILL OPPOSE ANY OTHER PERCEIVED COMPETITION

Doctors in the past have been held with reverence by the general public. We possessed that “secret knowledge” that others didn’t have access to, knowledge that fueled our healing power. Now everyone has access not only to all of the knowledge we have, but also to others who offer alternatives. This causes many doctors to aggressively discourage patients to research their own problems and to attack alternative providers. In defending their turf, however, they are giving patients an ultimatum: us or them. More and more patients are choosing “them” because of this and are rejecting what we offer.

By clinging to our power as healers, doctors have greatly harmed people’s trust in our profession.

So what’s the alternative? Does it really make a difference what we call ourselves as long as we practice medicine? I think it does. Now that I’ve got time to choose the best way to practice, I’ve seen that there is a much better alternative to being a healer: being a helper.

Yeah, that sounds all dull and boring, I know, but it is not only more realistic, it is a much better way to practice medicine. Here’s why:

1. BY BEING A HELPER, I ALWAYS CAN SUCCEED

I may not be able to fix someone’s pain, but I can reduce it or can help them get through it. Every visit is an opportunity to help someone, and once I have helped them I’ve done something that can’t be taken away. I don’t have to see disease as a foe to be defeated, but as an opportunity to give to my patient from my experience and knowledge. Even when patients ultimately succumb to death, I have many opportunities to help them do so with peace.

2. BEING A HELPER KEEPS MY PRIORITIES STRAIGHT

I don’t have some crazy idea that I have special powers. I don’t believe that I’ve been “called” or “chosen” to do magic. I just help people. My focus isn’t on me (as if my care was not a performance), but on the person I am helping.

3. BEING A HELPER KEEPS EXPECTATIONS REALISTIC

If my patients see me as a helper, not a healer, they will listen to my advice with different ears. I am standing beside them, not above them. They are far more likely to listen to me when I am offering help, not pronouncing my wisdom.

4. HELPING MEANS DOING NO HARM

The temptation to offer more tests, more procedures, or dangerous drugs becomes much smaller when I take the role of helper over that of healer. I don’t see a need to prove myself, and will consider the harm of actions much more closely. I won’t over-prescribe pain medications because I will see how it harms my patients in the end.

5. BEING A HELPER LETS ME EXIST IN THE INFORMATION AGE

Like it or not, I am compared to the homeopaths, the herbalists, the chiropractors, and the doctors on TV. When people embrace alternatives to the care I give, they are not necessarily rejecting me; they are seeking what they are when they come to me: to feel better and to lessen their fears about the future. If the help I offer is held next to the miracles promised by others, I think I will win. If patients are helped by others, though, then I should be glad for my patients, not upset about the success of my “rivals.”

We call what we do “health care,” which implies a relationship built for the sake of a person’s health. I believe the best way to accomplish this is to have a realistic view of who we are and what we do. I am not a healer. When I try to be one, I always fail and am always disappointed. I am a helper, and in taking that role I can always have opportunities to succeed.

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The Castle outside My Window….


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Here’s a story;
There’s a castle out there!….I can see it from the window of my small home that is bare and has what I need but not a lot a lot of other “stuff”. My home is full of love & trust…now….! That castle I see…the one U can see from my window….has people in it….people from my past! They are all having fun, laughing, dancing & thinking that they “have” each other….It looks great from the outside….and the unknowing ones want to travel to the castle to see the inside and have “fun” with all the people in there that seem to be vest friends and getting along….. But I KNOW…I KNOW….what is inside that castle, and I know what goes on in there! Once you are caught in their web, you want more for awhile ..until you are so low, so hurt, so abused and put down; that you either figure it out …or…you don’t!…..That depends on your true heart and soul….It’s not what you say to Jesus on or in the places where people can see it…. It is what you say when you are alone with him…. In your soul and in your heart… Where no one else knows or see’s… That is the truth of the love I have for him. It is inside…. Not posted or boasted all over for me to be judgmental and/or self righteous….to make others who believe something else feel small or “less than”….

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