Update On Upcoming Skull-Neuro-Ear Surgery


Hello Everyone !

Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!

**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…

Feel free to email me: tearsoftruth@yahoo.com

Love ❤️

Suzy

Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!

What Is A Chiari Migraine?


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

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

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

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

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

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

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

The Many Faces of Dysautonomia (NPR Article #10)


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Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how those who live with Dysautonomia feel much of the time. If the temperature drops and we get just a little bit cold, then we are freezing cold, our lips turn blue and we are shivering. It takes our bodies a long time to regulate when there’s a temperature change. We may start to sweat and feel so very hot from the inside out!  Many people don’t seem to understand the  fatigue, heart racing, inability to adjust our body temperatures, the GI upset,motility issues, inability to sleep or the pain. All of these feelings fall under this medical condition called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berserk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory, breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

Quite often those with Dysautonomia also live with Postural Orthostatic Tachycardia Syndrome. POTS causes feelings of being light-headed, fainting, dizzy, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold, as I mentioned above with Dysautonomia. Some people actually do faint while moving their body from the laying down or sitting position to standing upright.The diagnosis for POTS is usually made when a heart rate increases approximately 30 beats per minute (bpm) a few minutes after standing. Some people with severe cases of POTS, might need to get a pacemaker. There also may be other heart problems going on besides the Dysautonomia/POTS; as in my case.  *”Many times POTS shows up in women who appear to be “normal and healthy” on the outside. Researchers have found that these issues and symptoms are actually as disabling as such conditions as COPD and CHF” (*this information was found on “Dysautonomia International” website). Another common diagnosis for persons with ANS dysfunction or failure is “Arnold Chiari Malformation”.  This is something that a person is born with but it usually goes unnoticed until they have symptoms and then an MRI. It happens when the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. In my case I’m unable to hold my head up for a very long period of time because it feels weak and painful. “Chiari” can cause a number of disturbing issues for those who live with it. Some of these are: migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.

There are many “faces” to Dysautonomia, with its different symptoms and illnesses.  I’ve mentioned some of them, but there is so much more to this “Invisible Illness”.  For example; there are a number of other health issues associated with it and people don’t realize that some of these are linked together.  Some of these are:   CRPS or Complex Regional Pain Syndrome, Gastroparesis, Ehler Danlos Syndrome (EDS), CFS/ME and more.  Many times patients feel like they are just living with many different ailments.  Some physicians think that their patients with all of these different “issues” are just complicated. They don’t always look at how all of these ailments could be the many pieces one “puzzle”  that all fit together  because they are all under this “umbrella” of Dysautonomia.

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System (*numbers from “Dysautonomia International” website. Please try and remember these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr. has approved it! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  I’d rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of the statistics or medical information was taken from the “*Dysautonomia International” website at WWW.Dysautonomia.org. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day.

A Body in Chaos With Dysautonomia 


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Hello Luvs,

Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how I feel so much of the time. If the temperature drops and I get just a little bit cold, then I am freezing cold, my lips turn blue and I am shivering. It truly does take my body quite a long time to regulate when there’s a temperature change. Sometimes when I’m at home, I’ll be just sitting and watching T.V., when suddenly,  I start to sweat and feel so very hot from the inside out! I feel honestly as though I’m going to burn up, blow up or both! It’s a crazy feeling and it makes me feel so terrible. But it’s not crazy because I have my husband come over and feel the back of my neck and he can see that I’m shiny and “clammy” looking.  He has said that he feels the heat coming from my body! Others don’t seem to understand this. No one else seems to understand the  fatigue, heart racing, inability to adjust my body temperature, the GI upset,motility issues, the inability to sleep or the pain either. But all together it is called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berzerk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory -breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

In 2002, I was in a MVA and this is how most everything that is wrong with me began to happen. I started to faint quite frequently. Not only did that happen, but I had problems with all of the bodily functions mentioned above. They also found on an MRI that I have  have “Chiari Malformation I”.  This is a malformation of the brain.  It consists of a downward placement of the cerebellar tonsils through something called the foramen magnum. In plain English it means that the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. It feels as if I cannot hold my own head up because it is too painful. For me it causes the migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.  This is another issue or diagnosis that falls under Dysautonomia “Umbrella”. My Chiari was found and seen on the MRI s/p MVA. I suffered a TBI as well, following that car accident. I was in Brain Injury rehabilitation for 3 years. I saw a brain injury specialist, who is a PMR physician. He did so much and helped me quite a lot.  This Traumatic brain injury makes it impossible for me to recall from my short term memory. I had trouble finding words and still today cannot read a very long book. Articles are best for me.  When writing, as in my blog here, it is very frustrating because I have to read, re-read and read it again. I don’t remember anything unless I am told about 4 times, which is also what showed up in the multiple Neuro-psych testing that I had to do because of it.

I was in a full PT/OT and speech therapy /brain injury program.  Many days I was vomiting from the medicines they were trying to force me to take. I wanted to be a “good patient” and I tried some of them, but all of them made me sick in some way or ways.  One day I kept telling the Physical Therapist that I was not feeling well and I felt as though I might faint. Nobody would listen to me, because although I was in chronic intractable pain; which is horrible and terrible pain since the  MVA, I “looked fine”. So therefore, nobody listened and I was strapped to an exercise bike as they went on talking about their weekends. I felt worse and I called out to them, but no one came. Finally, I fainted!  Onto the floor I went, with my pained legs still attached to the bicycle. I awoke to someone taking my blood pressure. They told me to lay still for an ambulance because my BP was only 70/40 and my Heart rate was only 24.

I was taken by ambulance to a nearby hospital to get stabilized. They were very kind to me. They said that they did not have the facilities to do any kind of heart surgery or things that I may be needing, such as a Pacemaker; so I waited for a transfer to a bigger hospital. After some time went by, the ambulance with the heart monitors came for me. They took me to the big Hospital and I was admitted, observed overnight and then the Cardiologist came to talk with me in the morning. It was the morning of my birthday, my 41st birthday! They came in and told me that I had something called “Sick Sinus Syndrome”. It is a Cardiac Arrhythmia; it is called a “Brady/Tachy Arrhythmia”.  My heart rate could not decide if it wanted to go up to 190 bpm or go down to 24 bpm. It kept going like a roller coaster all night long…Up…down…Up…down. I was told that my heart even stopped several times but restarted on its own. They told me that my Heart was not working or beating properly and that I needed a pacemaker. I also had something called “Prinzmetal Angina”, which they explained was actually “Coronary spasms”. I take nitroglycerin sublingual tablets for the Prinzmetal Angina. I’ve been told that after waiting 5 minutes, and after trying the nitroglycerin tablets 3 times; if it doesn’t help the pain, then I am to go to the Emergency room. From that day on, my fainting spells went away about 80%. I still feel as though I might faint at times, and I have passed out a handful of times, but I don’t actually faint very often any longer. It is a rare occurrence now, very rare.

Within several months, the Brain Injury Rehab center, and my PMR Dr. who specializes in TBI’s or Brain injuries; got me an appointment with the very best Dr. for Dysautonomia in the USA. In fact, this Physician who is the Dept. Head of Cardiology/Vascular, Pediatric Cardiology, EPS (electrophysiology or Heart rhythm disorders) and also the Head of the University of Toledo’s Autonomic Failure Clinic,is Dr. Blair Grubb, M.D.! I was so lucky to be placed in his care. It was one of the very best things that did happen to me s/p that MVA in 2002. My first pacemaker was placed in February 2003. My next Pacemaker was placed in February 2013, exactly 10 years apart. Dr. Grubb hadn’t placed the first one because it was done quickly, here in Michigan. But when he got in there to replace it, he said that the person who’d placed it first; had done so, very deeply, right inside of the Pectoral muscle itself. He told my husband that “it looked like mincemeat” when he went in there. They hadn’t placed it in a mesh bag or anything as they usually do. Dr. Grubb already knew that I had been diagnosed with CRPS in 2007 and that it had spread from my right foot, s/p surgery, to both feet and up to the knees. Lucky for me, he’d researched RSD/CRPS and he found that sometimes if an “internal surgical wash” using  Bivupicaine, is done during surgeries that it should “head off” the spread of the RSD/CRPS from the rest of the body. Unfortunately for me it did not work out the way we’d hoped. My RSD/CRPS spread throughout my body. It went Systemic or Full Body and Disseminated. Dr. Grubb came out and told my husband that when he removed my pacemaker, my heart stopped and that I’m dependent totally on my pacemaker now.  He explained also that my Pectoral muscle had had to be rebuilt. It turned out to be a long, traumatic  surgery instead of a 45 minute Pacemaker replacement.

The turn of events that lead to the car accident, several surgeries and all of the chronic intractable pain; at least led me in the right direction and into the hands of the best Dr. ever, for the illnesses that I have been diagnosed with.  I’m so lucky to have him for all of my heart and pacemaker issues. I’m also very happy that he is the best and most well known Physician in the Country and outside of our Country for Dysautonomia and Autonomic Failure or ANS failure.  As time has gone on, all of my symptoms of Dysautonomia and also POTS (Postural Orthostatic tachycardia syndrome) have gotten worse as time has gone on. I now have been diagnosed with Chronic Kidney Disease stage II, Arnold Chiari Malformation I, Gastroparesis and more.  But these are some of the worse symptoms of the disease of Dysautonomia.  POTS, is where the Heart rate and blood pressure do opposite of what they should be doing, when you stand up after sitting down.  Sometimes you may feel faint as well with this and some people do actually faint from it.

Here let me explain it to you a little better. You see,as I did above, I can tell you how I feel. You won’t be able to grasp it if it has not happened to you. It is not a “hot flash”, like those during Menopause. It is a feeling of literally being so very close to a fire that you can really feel the deep heat from it. Sometimes this feeling will  last’s hours and even after I’ve taken a shower it happens and then I need another. Some of this “heat” and feeling of “being on fire from within” is also the Systemic or Full Body CRPS (Complex Regional Pain Syndrome) along side of the Dysautonomia/POTS etc. Let me explain a little bit better from several of the Dysautonomia websites full of  information. I will post the locations of the websites at the end of my post, so you will have them too. But before the next paragraph, before I get to the more technical stuff; just let me tell you in my own words, what I feel and what I do know. I think it helps me sometimes to relate to someone or something, when they are being “real” and telling their story.  I told you some of my  “story” in the first paragraph or two. But there is so much more information for you to learn and understand about this “invisible illness”.  Dysautonomia is like at “Umbrella” as it has many different symptoms and illnesses that it “covers”.  For example, many persons with this illness, also have CRPS or Complex Regional Pain Syndrome. I am one of those people; and I live with Systemic, Full body CRPS following my 7th surgery s/p the MVA. That foot surgery was in April of 2007 and I was Diagnosed with CRPS at my post-op check up. I couldn’t believe it and didn’t want to and so I got a 2nd opinion from an Orthopedic foot/ankle specialist. The first thing that he said when he saw my foot was “definitely CRPS here is a consultation to a pain clinic”.  I also have Gastroparesis now, which is the almost like a “paralysis” of the digestive system to varying degrees. I feel full very quickly, nauseous, bloated and I feel a burning in my lower abdomen. Another issue that goes along with this is “POTS” or Postural Orthostatic Tachycardia Syndrome. You guessed it, I have this one also. They all go together like a puzzle and they fit like together because they are all under this “umbrella” of Dysautonomia.

POTS causes feelings of being light headed, fainting, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold as I mentioned above as in Dysautonomia. While POTS usually shows up in women who look fine and healthy on the outside, *researchers  say that POTS and the issues that come with it are comparable to the disabling complications of COPD and CHF!!*(from Dysautonomia International)

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “involuntary or automatic” functions of the body that we do not think about or do consciously.  This is things like our: heart rate, blood pressure, digestion,  and temperature control. People living with various forms of Dysautonomia have trouble regulating their body temperature, body systems etc., which can make them feel lightheaded.  Sometimes things occur such as fainting, too high or too low blood pressure, abnormal heart rates (such as bradycardia, tachycardia or both, like I had), malnutrition, and in very severe cases even death can happen.

Please try and remember this or these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr’s told them so! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  Id rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. In honor of this 2016 “Invisible Illness week”, I hope that this post taught someone out there something about how this/these illnesses can affect someone’s life. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of this information was taken from the “*Dysautonomia International” website and more was from “*Healthline”. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day. (The information from these sources has * near it).  Thank you for visiting today. Please come back next time, which will be soon. The next post is going to be something positive and something about CRPS Awareness month, “November”. It’s also called “Nervember” by IPain and “Knowvember” by U.S. Pain Foundation.

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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.

My Letter To CNN


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Tonight I watched a CNN “Town Hall Meeting”, with Anderson Cooper, Dr. Sanjay Gupta, Dr. Leana Wen and Dr. Drew . This was nothing like what a “Town Hall Meeting”  is supposed to resemble! It was “one-sided” ……..and there was no one sticking up for the rights of chronic pain patients. Oh,I know that they were there. They were in the audience just hoping and waiting for their chance to get out “our” thoughts on the subject of Opioids. They’re  being slowly taken from us as we writhe in pain and the so called “Dr’s against opioids” want us to “think our pain away”!  Better yet, why not have a CRPS patient with Allodynia (hypersensinsitive to touch)/ pain patient, get a massage??  Once & for all,  an “addict” is not the same as a chronic pain patient!  Pain patients are not addicts. We do not “crave” our pain medications. We do not have overwhelming thoughts about our meds and we do NOT get any kind of “high” by taking our prescribed dosages in a responsible manner!  This is what I’d like to say to the producers, Dr’s & Mr. Cooper, at CNN!  Those persons who hijacked what was supposed to be a “Town Hall meeting”. But in real such arenas, you get to hear from both sides. This meeting was more like a documentary against the use of Opioids!  At one point Anderson Cooper allows a long time Opioid user, who’s a chronic pain patient, to take the microphone. She says that she’s been having a better life while taking the Opioids responsibly for over 20 years! She was “cut off” mid sentence by Dr. Drew, who tells her and everyone else that “she us NOT the Norm”!  It got worse and more against “us”/ the people living with chronic pain, as time went on!  Here is what I’d like to say to them should I get the chance:

This letter is not only for CNN’s Anderson Cooper, but for Dr. Sanjay Gupta, Dr. Leana Wen & Dr. Drew;

First of all, I’m writing not only for myself, but on behalf of all Chronic Pain patients. Number 1: The Disease of addiction is NOT equal to the Disease of Chronic Pain! They are not one in the same! That so-called “Town a meeting” on CNN this evening was not one at all! A true Town Meeting is an open forum that promotes Democracy! Tonight, Anderson Cooper & CNN’s “get together” with Dr.’s Drew, Gupta & Wen; was more like a one sided opinion/discussion meeting! Only one true chronic pain patient got to speak! Not only was she interrupted, but then Dr. Drew had to make sure to say that she “was not the ordinary”!

I’ve been a patient with chronic pain since 2002 s/p a MVA! Then after those multiple injuries, 8 surgeries and more pain than I want to remember, I got the worst form of Chronic Pain, called “Complex Regional Pain Syndrome”(it is #43 on the McGill Pain Scale. It’s right up there with cancer, childbirth & amputation of a finger). It was then, that I truly knew what chronic pain was all about. Or so I thought, until my CRPS went systemic/full body, s/p another surgery in 2013.

Mr. Cooper, at your meeting,it was mentioned that “2 million Americans misuse Opioids”. But do you know how many Chronic pain patients take their medications just as prescribed? The majority of Chronic Pain patients are conscientious in taking their prescribed Opioid pain medications. We do not CRAVE or get a “high” from our prescribed pain meds. Nor do we allow our pain meds to control us or our every thought. On the other hand, an addict is controlled by his drugs! That’s one main difference between pain patients and addicts. I control my medications, they don’t control me! Dependence and addiction are completely different. Many meds can cause withdrawals when cessation begins, for example: blood pressure medications, anti-depressants, Beta Blockers and so on! Do you know that “WE” (Pain patients) get lumped together with Heroin addicts? What if your mother or sister suffered 365/24/7 with horrible fire-like burning pain, like that of CRPS? Would you be so quick to push them into a category with “drug addicts”? What if they were under a reputable Dr’s care and taking pain medications in order to function and be able to get out of bed in the mornings?

Untreated Chronic Pain kills too! Opioids have been prescribed for pain for many years! Why punish everyone for the actions of a some?  When we are taking our pain medications responsibly and as prescribed. While we are under the care of a Medical Doctor who went to school for many years to learn his job; (whether he /she be a GP or Pain Management specialist).  This Physician took the oath to “Do No Harm” and as long as they’ve been prescribing responsibly; then there’s no reason for any of this! It’s just the latest hype by those who are “on a mission”! The people who are up in arms about this subject, are those who stand to lose the most money if we are allowed to just continue taking the medications that work for some of us! I’m talking about The Private clinics that are getting $2,000 cash, per Ketamine infusion because insurance doesn’t pay for that. Desperate people in horrible pain are willing to pay cash to have some sort of hope or even short time relief!! (**Ketamine is a much more dangerous drug! It’s used in Veterinary medicine , to tranquilize a horse)! Others that stand to lose money are the manufacturers of the spinal cord Stimulators and pain pumps, along with Massage & Acupuncture centers. Why let us take an inexpensive pill that has worked for several years? If something is and has been working, please don’t take it away?

The Disease of Chronic Pain does not Equal the Disease of addiction! Lastly, people suffer because Chronic Pain is not only stigmatized but it’s under treated. Suicide rates rise & will continue to do so, due to this lack of treatment & lack of availability of the medications required for the relief of chronic pain. Also because physicians are “running away” and closing their doors on chronic pain patients because of the fear that they now have of being taken away to jail just for doing the job for which they went through many years of schooling and took an oath to “Do No Harm”!

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