We ARE In The Room



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

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

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

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

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

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

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

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

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

Excerpts taken from DetroitNews.com

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

Never Judge By Outward Appearances 




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

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

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

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

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

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

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

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

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

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

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

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


#WhyISign


This is my story for # Why I Sign? Campaign at #whyisign on YouTube, Instagram & Facebook. The CC is right there on YouTube and there’s one right on the video in my Instagram too! The link to my story in Instagram is here: Link to my #WhyISign Video withCC on Instagram and then the link to my #WhyISign story on YouTube (which also has CC for the “Sign Language Impaired” **Lol …just teasing) is just below this paragraph. Thank you for stopping by to find out my story and the reasons “Why I Sign”!!

Updated “WHY I SIGN?” Video on my YouTube Channel At: @ASLSuzyQ

AND….THATS…. #WHYISIGN ….bye ..Love, Suzy

Walking Through The Day With a Pain Warrior


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This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

 

 

 

 

From Mini Van to Wheelchair In 10 Seconds!


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I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”.  My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”!  She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.

I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2.  We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do  a lot of outings and I just am not able to babysit alone, without my husband there.  I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident.  My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline.  I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!

So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed.  My pain Dr. is much better now and the regimen that I’m on is safer.  But I’m unable to do the activities that I wish to do with them.  If I was the person that I had been, I would be making snow angels with them in the snow.  I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together.  I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.

Time has changed me and now I am tired and in pain much faster;  more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”.  It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery.  I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all.  I want to spend a whole day at the zoo with my granddaughters.  I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning.  Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference.  Things that I wish I could do, I no longer am able to do.  I love and look forward to babysitting when my husband is home and he is with me.  He is there so that when I start to be too tired and in too much pain, he takes over.

But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident.  My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself.  I couldn’t even go to the rest room without help.  My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad.  When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family.  I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead.  I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.

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From Interpreter for The Deaf To Hard of Hearing, in 10 Seconds!


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Hello Luvs,

Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved first attempt and that doesn’t happen often. When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years.  We don’t want her to have to tell her story to even one more person.”  I was approved and then things got medically worse from there.  In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light.  Within seconds, our lives changed forever!

I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams. I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation.  Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries.  I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction.  I endured many hours of MRI’s and other more invasive tests. After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker.  As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.

In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners. Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it!  After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic.  I had first gone to the pain clinic for:  cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more. The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.

Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were:  “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more.  Nothing has improved very much, in those areas since that time.  As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now.  I cannot remember movies and can see the same movie several times.  If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told.  I feel very bad when I meet new friends, especially online “friends”.  When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report!  I have recently been diagnosed with Gastroparesis and you can’t see it!  Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”.  It is what’s happening on the inside, that is important.

The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”.  Since then,  it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting.  I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision,  extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.

I went to University and graduated with honors in Sign Language Studies/Interpreting.  I worked for a local school district’s Deaf/HoH program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hard of Hearing person  with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data.  Now I depend on my smart phone, using:  Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.

I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!!  Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.

Christmas “Present”


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Hello Luvs,
It’s been a rough few months but now it’s time to get to the “present” and think about the holidays. Even though Christmas day is done it’s still a great time to think about the “true” meaning of the holidays.
We had a wonderful “pre-Christmas” family get-together this year.  It was at our house last weekend before Christmas! It was a wonderful and awesome family time together. I got to have both of my daughters, their husbands and our 3 granddaughters all together under one roof! It was awesome! I got to sit out in my rocking chair, in the living room; while rocking our youngest granddaughter to sleep. She was so quiet, serene and held onto my finger. While rocking her to sleep, it was wonderful listening to the chatter throughout the house. Everyone was happy, talking and laughing.  It’s times like these and occasions like this that are the foundation for building the memories we wish for ourselves and our families.
Now…I know the word “family” can hit a nerve with some people, especially during the Holiday season. But you know that you don’t have to force yourself to sit in a room filled with people who: put you down, denigrate you, degrade you, call you names, hurt you and don’t love you the way they should. YOU are worth more than this! Why people do this and complain about it, I will never understand?  A “family” doesn’t have to be biological. Your family might be a group of your chosen friends.
I’ve come to the conclusion that we put too many expectations on the Christmas season. This is why so many people get more depressed, stressed and the suicide rate is even higher at this time of year.
If you have read any of this blog from the beginning, then you KNOW that I have some reasons to NOT like Christmas time and/or the holiday season. My mother died on December 22, 2002~and my grandmother died on December 30, 1986! I’ve got health issues and most of all chronic intractable pain! I have a progressive, most painful Neurological and autoimmune disease called “RSD/CRPS”. It is also known as “Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome”. Mine is systemic/full body, disseminated and severe. I have Dysautonomia/POTS/NCS and you can just *Google any of those if you wish.(If you have any questions, please message me because I can send you in the right direction if you are suffering from any of these illnesses and I may be able to help with some others too!)
My message to you this holiday season, is to try and NOT go if you don’t HAVE TO GO!~ Don’t spend time with people who don’t deserve you. Concentrate on those that are there for you all of the times, good and bad. If you must be alone, you can turn on music that is calming. You can watch Holiday movies or even drama, adventure films or comedies. If you feel like you want to get out of the house, it is OK to go to the movies by yourself. They are open on Christmas and New Years day.
Spoil yourself and sit with a comfy blanket, read a good book or play with your IPAD, laptop or your smart phone. You may choose to color with markers, crayons or chunky crayons (if your hands hurt badly) in those great new adult type of coloring books.  You may choose to bake,  do crafts or make a scrapbook.
The other thing is this….if you really have someone that you love and you want to be with them but you can’t possibly be there. That’s what SKYPE and /or FACETIME are for! We have friends in Scotland, Australia and Singapore and on Christmas sometimes we turn on the Face time or Skype and we open our pressies from each other IN FRONT OF EACH OTHER! Isn’t that way cool? Technology has become a life saver for many people.
If you are full of bad memories and they are clogging up your mind. Try to think of at least one or two good memories that you have?? I remember our church program one year when they had videotaped children seeing their Military parents come home for Christmas! These kids were in awe with their mouths as open as I’ve never seen before. They were genuinely excited and totally surprised to see their father or mother. They hadn’t thought they’d be seeing them and suddenly that parent walked into their classroom or someplace where they could surprise them well! The looks on their faces were precious and priceless!
I have a GOOD memory,that I want to share with you today. Much of my blog is about some of the bad things that have happened and seems to continue to happen to me throughout my life. But today, I want to share a happy memory and I hope it will help you through your holidays that sometimes can feel “empty” and /or “hopeless” when you are not celebrating as the rest of the population “appears” to be celebrating. Just remember, you have to make your own atmosphere and do what you can to stay “afloat” and not get too sad. There are some suggestions above, that I’ve given you. There are others in books and blogs and websites, you just have to go and look for the help you need.
Here is my happy memory:  When I was about 12 years old, I had made friends with a “grandma” type lady down the street from us. Her name was “Mrs. Usitis” and she invited me to tag along with her to Pennsylvania from Michigan where we lived. My parents allowed me to go because I was going with her and she was taking me to visit with her grand niece who was just one year older than me.
We arrived and I stayed with the young niece and her parents and Mrs. U. stayed with her sister and brother in law. I had a wonderful time and they treated me very well. But I just didn’t know them well, yet..at the time. I had never been away from home or even really never spent the night anywhere before that. I was homesick. I missed my bed and my mom and dad.*( I don’t have a ton of bad memories as a very very young child. I have some and some that I thought were “normal” and I’ve since found out that they are not “normal” and they were downright abusive even then, when I thought my family was “normal” and that I was the “bad one”.)
My mom got my phone calls and I couldn’t sleep or eat and I felt really far away from anything I knew.  She spoke to a cousin of hers in Pennsylvania and they said that the friends who I was staying with could bring me to their home. They thought if I was with “COUSINS”(even though I’d never even met them), that it might help me feel more comfortable. I still felt homesick and was crying and wanted to go home, because I didn’t know them either. They were as nice as they could be to me!
As I was walking around their house one day, eating a Popsicle, I heard the doorbell ring. She opened the door and there standing in the doorway, I saw my “DADDY”!!!(My brothers came too, but I didn’t care so much about them being there, as they drove with dad to keep him company…ha ha…). Back in those days, I felt that my dad and my oldest brother were my “protectors”. At the age of 12, in my head, I thought that I was “bad” and that everything that happened at our house was my fault. At that time, I felt that my mom was the more abusive person in the household. As you grow older and get the “help” or much needed therapy; you find that reality is not what you once thought.
I saw the door open and my dad was standing on the front porch. At the same time, I threw my Popsicle out into the abyss of “wherever?” and I ran as fast as possible and jumped up into my dads arms! OH….oh how I love that memory!  He came to rescue me from nothing whatsoever that was “bad”, but just my being homesick for familiar surroundings. I had led and have really led a very sheltered life especially back then. We didn’t go on vacations, I didn’t go out to dinner with my parents or family; rarely even on special occasions. We pretty much went to school and stayed home. So you can imagine what a “culture shock” it would have been for me at that age and after never being out of my state OF Michigan. I mean…I went on my first airplane ride, with a neighbor lady, not someone I knew REALLY well.(But they were the nicest people…they even fed me when they knew I was hungry because I wasn’t allowed to eat much at home, at all.), and was going to stay maybe 10 days to 2 weeks? I cannot remember all of those details, but the best part of that story was when I threw my Popsicle wherever it went, we’ll never know!! LOL ….I ran and jumped up into my “daddy’s arms”.
Now THAT’s a good memory, huh?
I just wanted to reiterate that you don’t have to “choose” to be down, lonely ,sad etc during the holidays. I try to remember that life goes both ways.  There are people who have it much better than me, and there are also those who have a much more difficult existence than I do.  Sometimes it doesn’t feel like a choice because we can get into a “rut”. When pain is all you know and you feel it day in and day out.  When you hurt no matter if you’re lying down, sitting in a chair or trying to walk a bit. It’s hard to not concentrate on the bad stuff. It’s sometimes difficult to see others who are not in pain doing the things that we want to do. But Life is only 10% what happens to you and 90% is the way you look at it, or your own attitude! Try to relax, breathe and enjoy whatever moments that you can and don’t expect anything and you won’t be let down!
Happy Holiday season to everyone. Please pray for our Soldiers who will not be able to be anywhere near home for the Holidays, with their own families. They are out fighting for our country and our lives, our children and grandchildren’s future and lives too!  Pray for them, for the young men and women who are fighting as I write this blog. My friend, “R”, has a son who is in Afghanistan right now. He left just a month ago or so? He is one that cannot make it home for Christmas. So let’s pray for “R” and her son, “S” and anyone else that you’d like to say a prayer for at this time and during this season of Jesus’ birth.

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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.

The Beginning of the End…..And A New Beginning


Hello Luvs,

So here I sit, as I used to write about heartache, heartbreak and of things in the past, now I am writing to you in writhing pain as my Physician of 12 years just up and left many people in pain and left us out to allow fate to have it’s will with us. I know that I’ve written to you of late, how my Dr left and how angry and upset I’ve been. I wrote about how the pain Dr. that knew me in the past, right after my car accident in 2002, wouldn’t even see me or help me because of a “situation” and for no other reason. He didn’t want to be “involved” in a mess of being inundated with pain patients from this physician. I’m pretty sure some of them may have been unreal and faking their pain but many, like myself, have real pain issues. I think I told you also about the other Dr. who owns the practice and how he is very very angry at being “left with a mess” of pain patients on all kinds of pain medications and way too much!  This would mean, including me! My old Physician left, but in the past 12 years he was like a big “teddy bear” and kind and he had kind eyes. I never thought for even a moment that he would leave me “out to dry ” like this…..or even “to die”.  I don’t want to repeat myself, but I have much to say about this subject and I think maybe people can learn something from this experience. You have to stop being afraid, like I have been or had been in the past. Sometimes I am still afraid but I do my best to keep on going and not be afraid.

Back in 2002, I was in a horrible car accident. I was poo poo’d by the hospital called “St. Joe’s” here in Ann Arbor ,Michigan.  I had been on disability since 1998, for PTSD and CKDII.  When my disability was approved, they called my husband and told him that I “didn’t even have to go to their own Dr’s because after reading my several Dr  reports, they didn’t want to put me through having to tell my story even one more time. I was approved!”  I tried to get the nightmares and the fear to stop. I was trying so hard and the possibility of trying to return to my job at the U of Mich. hospitals as an Interpreter for the Deaf and as an Outpatient clerk III, felt like it just might happen one day. But then in August of 2002, a man ran a red light while fighting with his wife and I was hurt bad as his car T-boned my car and I lay unconscious on the cement afterwards.  I was out for about 20-30 minutes I was told. Then taken by ambulance to the hospital where they did some Xrays and put me in the ER for many hours and left me there. One Dr. was wanting his shift to be over and he was going to send me home. I had just been screaming so loudly during Xrays, that my husband said people were leaving the waiting area so as not to hear my screams of pain. The nurse that was assigned to me that night, I wish I could thank him someday in person. He saved me. When that one Doc was going to try to just “send me home” when I couldn’t even stand or walk or move without being in horrible screaming pain, he called a trauma Dr. She got the bal rolling and they admitted me.  But sadly, I still did not get the care that I should have gotten and they just let me sit in shoulder  braces for 5 days until my husband finally brought me home to take  me to some good Dr’s that might help me. At the hospital I was looked at differently because I only weighed 99 lbs. I was tiny and 5 feet 5 inches tall. I had been going through Anorexia off and on since I was about 17 years old. That is another whole story in and of itself. But I was still very sane and smart and not crazy in any way, shape or form. I was not on any medications, but I had been seeing a wonderful Psychologist who was helping me makes sense of some things that had happened to me while growing up and while as an adult member of my family as well.

So after 5 days of being NOT treated kindly and NOT being diagnosed properly, my husband was so appalled at the way things were happening or NOT happening, that he took me out of there. I ended up finding out that I had suffered an MTBI and several other horribly painful injuries. After 3 years at the Ann Arbor Rehab center for TBI’s, and after 10 surgeries or so, I finally know all that went wrong and I’ve had to go through many horrible Dr’s appointment experiences but I’d finally found some help. I met a great Brain Injury Dr. at St Joe’s and he helped me every step of the way. He was not on “My” side but on the side of truth and right and goodness, which was the same side that I always try to be on! I got help dealing with the short term memory loss and the difference in my personality a bit and I learned that I was now unable to read large books such as the “Harry Potter” series, but I could read Magazine articles. I am unable to still remember things that I’ve read. But when I’ve heard the same things several times, then I surely can remember them. I ended up having 2 screws put in my left shoulder because after a year of seeing several shoulder Dr’s, they all told me that I just had some “torn rotator cuffs and then frozen shoulders”. They kept on sending me to painful PT.  Later, I finally did not give up and found a Dr. to listen to me and he sent me to the Cleveland clinic. Dr. John Brems, orthopedic specialist, told me that he could do a “nerve and muscle transfer from a cadaver” but he then thought it might me just alot more pain for me and it would only have fixed one thing out of many issues for me at that time. My new shoulder Dr. though, told me that I in fact “was NOT crazy” and he had to go into my shoulder in an open surgery and unattach my biceps tendon (which had grown attached to the bone wrongly for over a year because nobody would listen to me) and reattach it to the bone with two titanium screws. It helped the nerve “zings” immediately and I was so greatful to him.

I was in the hospital for pain control when I met Dr. Bullach. He was a kind man and he had a kind manner about him. I had been seeing the other Dr. in the practice since 1986, and we got along great.  But my parents decided to go to him 10 years after I’d been a patient there and they started telling hem that all that I’d told him “was a lie”. He got confused and he came to me telling me that “they seemed like nice people and I seemed like a nice person and now he did not know who to believe?” I saved him the trouble and I left the practice. Only to return when I got afraid after the car accident. I came back because they knew me and had years of my records and I was in pain and afraid. Lucky for me, there was a new Dr there and I got along great with him so I switched over to Dr. Bullach for the next 12 years. He had no problem believing in me and he talked to my other Dr’s and Psychologist and I had a great team.  He always told me that he was “the eye in the middle of my storm”. I believed in him and trusted him. In 2005, after trying so many medications that all made me either very ill or I was allergic to them, he started me on the Fentanyl suckers and the patches together. It was only the 2nd time that anything had worked for my pain. With the pain Dr. I had been on a medication called “Kadian” and it was extended release Morphine. It worked for 2 years and then just stopped working. The pain dr. wanted me to get an Intrathecal pain pump. I didn’t want something else put into my body, let alone stuck into my spine dripping medication into it and being “dependant forever” on another human being to fill it. I decided to just stick to meds and therefore the pain dr stopped seeing me. He turned me over to dr. Bullach to just give me pain meds and said that he “could consult with him at any time and he would help”. That never happened because Dr. Bullach put me on the above 2 meds and I stayed on them until he left the practice in December 2014.

I had gotten a letter from the insurance company stating that they “would not be paying for my pain meds after March 2015 unless a pain dr. agreed with Dr. Bullach’s treatment plan.”  Well in December, Dr Bullach got into “trouble” and left the practice to go and work at an urgent care in Jackson, MI. He wrote too many prescriptions for pain meds for too many people. He over medicated too many people and I was one of them. I had no idea because before that MVA in 2002, I never even took an Aspirin for headaches. I never had pain issues before! I had no idea what was happening or what was about to happen to me.   Dr. Bullach just kept on telling me to “trust him” and “not to worry”. For the past 3 years I had asked him to help me go down from the meds i was on. I was afraid of being on too much and I was worried but he just kept on telling me that he got “me off of the hospital bed in my living room” and if and when the time came, he would help me get off of the meds.  Well, the time came and I had no control over it and he was nowhere to be found to help me. I was on my own and very afraid.

I went back to the pain Dr. that helped me for the 3 years following the car accident. He was good with me and believed in me and I in him. I was compliant and did what he asked and it all was good. But when I went back to ask for help after dr. Bullach left, he didn’t want anything to do with me!!! He wanted to sell me out and he saw me one time only to tell me that I had to go to be screened by another pain Dr. friend of his!  Have you ever heard of a pain Dr. not feeling confident in himself and having to send someone to a “friend of his” for a consultation? It made no sense until I heard him say that He really was “inundated with many of Dr. Bullach’s pain patients and many of them were just drug seekers and he didn’t want to be any part of that”.   But he knew me? I didn’t do anything wrong? I had only always done whatever was asked of me? What did I do wrong? I needed help and nobody would help me. I was very afraid and didn’t know where to go or what to do. I knew that I did NOT want to go and see his “FRIEND” …..after looking him up online, his friend was a “Dr. Malinoff” in AnnArbor who is in “detroit hourly” magazine and who gets “awards” for being such a great doc….in print!! But from what the hundreds of people wrote about him in many many reviews, I was not about to go and see him EVER! I read up on him at his website. He even states there that he broke his own foot and didn’t even go to a Dr. for 3 months. His wife finally forced him to go and he had a broken foot. He prides himself that he walked on it all of that time without even a pain pill! He had surgery and he again prided himself on “not taking anything for pain”. He even said that If you wake up in the morning and put your feet on the floor and you don’t have pain, then you should be looking for your name in the obituaries!!! I won’t quote that because he said that his father said it and he also believed in this view. But I don’t like to quote things unless I have the exact words and I’m not 100% sure of the exact wording, but this is truly what he said on his website and you can find it for yourself just by looking him up in Ann Arbor,MI.

Now, I have always been a person who never drank or took any drugs of any kind. I was NOT going to see this Dr. who I had read about and heard about from other pain patients that I admire and trust; when what I’d heard was very bad practice. He takes peoples medications away from them and puts them on Suboxone or Methadone right away. You are not even looked at as an individual and to see what might or might not work for you. This is what I’ve heard and what I read at his website as well. I am a good person who never drank or did drugs or anything bad and there was no way I was going to be sent to this place and then to possibly be put on who knows what list and never ever be helped again in my life for the real pain issues that I have. Even the first pain Dr. agreed that “I had many big pain issues” and he was very sorry but he just couldn’t take any of Dr. Bullach’s patients on.

I persevered and I finally found a pain Dr right here in my own town. He is awesome so far and I liked him very much during my first visit to him. I will see him again in August. But he did take me off of the Fentanyl Suckers. He says they are “very dangerous and I should never have been given them”. He said they are for “end of life” and for those who do not have stomachs to swallow meds. etc.  He is keeping me on the patch and he gave me a different medication for my pain and I will be starting it “cold turkey” on Monday July 13th. I’m scared as I’ve gone down from my suckers from the 20 or so that Dr. Bullach had me on and now to only 3 per day. But it’s still a scary thing when I’ve been on them for almost 12 years and they are what has worked for me. So far the new meds that I’ve been trying to start taking a little bit here and there, are not working very well. I’m feeling very sweaty and sick and nauseated and my pain is not going away at all. No break from the pain like I’m used to getting with the suckers. I’m doing it but I’m scared and in only two more days, I will wake up and only have the pills and the patches. ….no more Actiq suckers and  I know I can do this but it’s so hard and it’s hard already and I’ve just gone down to a couple per day, how will I do with zero?? I guess we will all see very soon. But as soon as I do this all by myself, but still  with a new pain Dr. by my side and my wonderful husband, I will be sending out a letter to the one Dr. who did take over and help me until I could find a different pain Dr. to help.  Also to the other 2 Dr’s who refused to help me, they will be receiving a letter as well. One will go to  Dr Bullach, because he truly hurt me by leaving and not caring about me at all…and then the pain Dr. who was going to “throw me to the wolves” and didn’t care one bit either!

Here is a copy of the letter that they will be receiving: (I will post the copy of the letter next week at the end of the week after I know the letter has been received by the appropriate Physicians).  So watch for that letter, I will post it probably next weekend sometime….I look forward to you reading it…thank you so much…Please pray for me and wish me luck because I’m afraid and feeling awful sweaty and sick already as I write this blog today…sending Love, Suz

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