Pain Acceptance, The Newest Lie


As I was listening to the Vox.com podcast a few days ago, I heard the voice of PROP’s president, Jane Ballentyne, surprised and complaining about how she’s been treated recently. After hearing about her belief regarding the “acceptance of pain”; several pain patients wrote negatively to her in the comments of articles and a podcast.  Some people even wrote to her employer at the University of Washington and wanted her fired, she says. I’m wondering, why she is so surprised? But obviously those who agree with her and think this is a good idea, have not lived with daily, unrelenting, horrible pain such as the kind that comes with  illnesses like:  CRPS, Ehlers Danlos Syndrome, Ankylosing Spondylosis and many others.

What I don’t understand is that in these modern liberal days of persons not having to accept anything else about themselves, why are pain patients being forced to “accept” their pain? Today in 2017, people are allowed to change their gender, nationality and  their bodies.  There’s nothing wrong with a man becoming a woman, or a Caucasian man becoming a Filipino woman; as I saw on the news the other night. In 2017, there’s nothing wrong with a woman getting liposuction on her hips, if she feels they are too big, or breast implants if she feels those are too small. If other human beings are “allowed” to do all of this, then why are chronic pain patients supposed to or urged now, to accept their torturous, horrific daily 24/7/365 state of living with chronic pain?? Now days nobody has to “just accept” anything about themselves. Something is really “fishy” here? In my own personal opinion, I feel like the United States is trying to kill off it’s weakest and most vulnerable chronic pain patients. Why do you think this might be the case? Again, my thoughts are that it is because they are concerned that the “baby boomers” are going to deplete the Medicare/Medicaid system and there won’t be anything left soon. Why not “get rid of” the sickest and most weak of Americans to save some money? I don’t know this of course, but it sure is a scary thought when everyone else is allowed to surgically change everything about their gender, race and body; but the chronic pain patients are now not allowed to have the simplest pill that can help to lower their chronic pain.  Suddenly, opioids are now being considered evil and all must be destroyed.  We must learn to “accept our pain”.  I don’t want to just accept my pain, anymore than someone who feels that they were born the wrong gender, should have to stay that way forever and just “accept” it.

So I’ve been researching other countries and speaking to other chronic pain patients around the world, thanks to the internet.  I was discussing the “opioid crisis” with my friend in Israel.  He sent me a piece of information about a University of Michigan Coursera. You can look at what I looked at here:  Teach-Out: Solving the Opioid Crisis/Coursera.  He told me that he had been seeing what’s happening in the USA and how concerned we are about the topic of Opioids.  He wanted to know if this was truth or not?   Naturally,  you must take the course to learn about what they want you to know. But just from the introduction that I read, it is packed full of disinformation. They tell the same “lies” that were exposed in Andrew Kolodny’s article “The Opioid Epidemic in 6 Charts”. Josh Bloom, a journalist and PHD, exposes how Kolodny, those that follow him, and some of the media (it seems), are changing the truth to their advantage. In his article, The Opioid Epidemic In 6 Charts Designed To Deceive You , Josh proves how in Kolodny’s orginial article, The Opioid Epidemic in 6 Charts, deceives us with false numbers.  The first sentence that Kolodny writes in his editorial states “drug overdose deaths” are about 60,000 annually. When we see that we immediately think that he’s talking about prescription pain medication overdoses. But, Josh Bloom points out that actually 30,000 people were killed.  This included all opioids including heroin.  The actual true number of deaths just from prescription pain medications or opioids used for chronic pain; was about 17,000.  Also, in Mr. Blooms article as cited above, he states that the number of 17,000 is “half the number of accidental falls”.  But 17,000 is not exactly right either, because that includes all opioid overdose deaths which were in combination with other medications.  The true death by opioid pain medications is about 5,000, according to this same article.  That is much less than Kolodny’s original “60,000 deaths”, scare tactic, from drug overdose.

Also, why are we not looking into the deaths by alcohol?  According to the NIH (National Institute of Health), the NIAAA (National Institute on Alcohol Abuse and Alcoholism) and this article Alcohol Facts and Statistics, “88,000 (62,000 men and 26,000 women) people die from alcohol-related causes annually”.  This makes alcohol the third  preventable cause of death in the United States. Do you know that the first and second causes of preventable deaths are from tobacco and poor diet/physical inactivity? So why are we not talking about the Alcohol and/or tobacco related death epidemic? Do you want to know why? I know I sure would like to know the answer.

My friends in other countries are telling me to come and live there. They don’t understand why this is happening over here in the USA? The friend that I was referring to earlier on, who lives in Israel; cannot believe that this is happening to the people he knows here in the USA.  He even said that he sent me the information regarding the Coursera, because he “had a feeling they were lying”. He asked me “Do you have any guess why they are doing all of these things to hurt all of you?” The only answer that I could come up with is, “Money”. The reason that I stated above, regarding Medicare/Medicaid and the baby boomers. I was embarrassed to say that to my friend, but I still did. His response was “this is horrible”. He said that “in Israel you can get as much as you need; as long as it is opioids and not medical marijuana”.  It is totally opposite of that here in the USA.  In Israel, the primary care doc can prescribe what he believes will help the diagnosis of his patients. Imagine that! Oh wait, that is how it used to be here in the USA also! But not anymore!  I asked my friend if his primary  or pain Dr. helps him more? He told me “My primary helps me, of course! She helps the most.  She is nice, caring and gave me the pain medication with out any pain doctors advice.  On her own, because she is a DOCTOR herself…..you know? AS it should be”! Also, as I feel it should be in the United States once again.

Withdrawals From Actiq…..3 Weeks Later….For CRPS/Systemic


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“Why give up everything for one thing when you can give up one thing for everything”……Unknown

Hello Luvs,

Wow…it has now been 3 weeks (*tomorrow….On Monday, Aug 3, 2015), since I went  from 5 Fentanyl “Actiq” Lollipops per day (Plus the long lasting Fentanyl patch that I still continue to wear and to change every 48 hours), to zero Actiq lollipops for Breakthrough pain per day. I went to bed on the 12th of July taking my last “sucker” for pain and I woke up being unable, not allowed  to take another. The first day wasn’t as bad as I thought it would be. I am suspecting that was because I still had residuals left in my system.  By the end of the first night, I started feeling pretty ill. The second day was wasn’t so bad and the 3,4th, and 5th days were the worst.  I can tell you that it feels like the very worst flu that I’ve ever had. It includes: vomiting, diarrhea, chills, awful sweats and all I wanted to do was lay on my couch, bed or “Lazy Boy” chair. I am sometimes hungry, but when I eat, my stomach hurts. I feel bloated and nothing sounds good to eat and even drinking doesn’t sound good. I used to love my hot tea, my coffee and diet pepsi and none of that even sounds good to me now.  Nothing is the same and now it’s been 3 weeks!

We called the Dr. about 5 days into this and told him how awful I’d been feeling. I did a lot of research, went onto forums for withdrawals and such. I found out that there are a few different meds that can help through the hardest days at the beginning especially. The first one is a blood pressure medication called “Catapres” also called “Clonodine”. There is an anti-anxiey /anti-panic attack type of drug called “Klonopin” that can also help with the withdrawal and flu-like symptoms. Then another thing that can help are the medications that are for anxiety, such as: Ativan, Xanax or even Valium. You don’t need to take them for a long time but just long enough to help you through a hard time. If you find yourself in this kind of situation, please research online forums, use “google” to look up information on withdrawals and then check out “You Tube” videos online about withdrawals too!  My Dr. gave me the Catapress and I took it for about 2 weeks and it helped very much with the symptoms of chills, sweats etc. That is driving me crazy! The chills and sweats are getting lesser and less often but the knee dropping fatigue just won’t stop!

So now I’m actually finishing the 3rd week of not taking the one thing that actually worked for my pain.  The Fentanyl Lollipops helped me and though I never should’ve been given the large amount that Dr. Bullach had given me, I felt so much better when I was down and got myself down to the FDA approved amount. I don’t understand  at all why I have to go through the pain of the withdrawals from something that helped my pain the most and did not upset my GI tract. I now remember and cannot believe that I didn’t remember when the pain Dr. asked me “do you have stomach issues? Why are you taking the lollipops in the first place?” I told him that I didn’t have issues with my stomach and due to my MTBI I forget certain things. I remember now that Dr. Bullach had written a “book” for the Insurance company about me and why I needed to take Actiq losenges or lollipops because of the numerous different meds that I tried with horrible GI side effects or allergic reactions. I had forgotten all about that until I started taking Dilauded on a daily basis. It’s ripping up my stomach!

It’s been 3 weeks and I cry often and feel very depressed. I’m not ever very hungry and I’ve not lost any weight! How crazy is that? I feel nauseous and my stomach down in my lower intestines, feels bloated and hurts every time I eat something! Nothing sounds good and nothing much tastes very good. I’m going to the pain Dr. this week and I need to talk to him and tell him everything. But I just really don’t want to try a bunch of other medications that might make my stomach worse or have even worse side effects. The one side effect that I cannot handle is “weight gain”. I already feel much to heavy now and I cannot afford to gain an ounce. I used to have Anorexia since I was about 13 yrs old and I fought in on and off until I was in that car accident . I will only say one thing about the eating disorder, and that happened because of things ….no….”Abuse” that happened in my home growing up. My kidneys and tubules from my kidneys are too small according to the Ultrasound that the Nephrologist did several years ago following my episode of acute renal failure in 1994. I’ve been on SSDI for Chronic Kidney Disease Stage II and Complex PTSD. To make a very long story, very very short, my heart and my kidneys have medical issues due to me being starved and poisoned with syrup of Ipecac during my childhood. I have seen my pediatrician records, shot records etc.; my dad gave them to me after my mom died and I don’t think he knew what they said!  They are written all over by the pediatrician. It says “Feed this baby”!  “This baby is Anemic! Give her Iron”….then the Dr. wrote some instructions with names of baby foods and formulas with iron etc. So ….lastly, regarding this subject, I do have stomach issues and when I was terribly Anemic in 1999, 2000, 2001; I had 3 blood transfusions!!! They didn’t work and the Hemoglobin was at 8. when I had the last one! So I visited a Hematologist and he gave me an IV infusion of something that helped and my Anemia has been much better since 2002!!!

Since that awful car accident on 8-11-02, and all of the chronic intractable pain, the surgeries and the horrible pain following the surgeries; I just didn’t care anymore about how much I weighed. The numbers didn’t matter any longer! I needed to eat to help myself feel less pain, take medications to help with the ongoing pain following that accident.!!! I slowly started gaining weight as at the time of the MVA, I only weighed about 90 pounds and I am 5’5” tall! Slowly I allowed myself the nourishment to “fix” or help “fix” my pained and broken body. I’ve gotten up to about 145 lbs now and to me, that is too much. For a long time I didn’t weigh myself because as long as I could wear a size 6, I felt OK with myself. I can still wear a “misses” size 6 in relaxed jeans but I feel very big now because I need to use a cane, a wheelchair at times and even a walker. I don’t exercise because I get out of breath and in too much pain and am unable to do much of anything. The CRPS started in 2007 in my right foot following a surgery. It spread to both feet and my knees as well. Now it is full body  “systemic” and I cannot even walk more than just a few minutes, like 20 minutes I suppose. Some days a little more and other days a little less. I’m trying not to worry about that, the “numbers” game, but it’s really scaring me because for the past 3 weeks now, I’ve had a very hard time eating anything much at all and I have not lost but 3 pounds. My Lymphedema in my left arm from the CRPS on my whole left side internally, doesn’t help with that because I get a lot of edema! My feet, legs and arms swell. I’m pretty much miserable!

I didn’t mean to go there. I wasn’t planning on talking about the Anorexia. But I am proud of myself for a few reasons. I have cured myself of the Anorexia (although I will always have the food fears and I will always have the distorted body image and thoughts that go with it all. But I will not ever be acting on those fears and thoughts again, for life and death reasons because I love my husband, kids and grandkids much more than I care about those numbers! I always did but I felt too “out of control” and controlled by my fears of food way back when!

Ok…..so back to these past few weeks…..this has been the hardest or one of the top few hardest things that I’ve ever done. I asked the Dr. who took over for Dr. Bullach,(**and got me through by prescribing lower and lower doses of the meds that would’ve and could’ve killed me if he had not done that for me) if he was “proud of me” for stopping the Fentanyl lollipops?  I asked him also if he liked the letter that I wrote to him, Dr. Bullach and Dr. Dobritt, the old pain Dr.?  He smiled and said that his Office employees were impressed and he left it at that. I could see it in his face and his eyes. His demeanor was very different this past visit, with my being off of that prescription now  and him not having to write it for me any longer. He is relieved and I do feel that he is very happy for me and proud of me. That shouldn’t really matter to me but it does make me feel good that I did and am doing and have done something very very difficult that even some of the strongest willed people might not have been able to do!! But I’ve done it and i’m doing it!!

After having said all that I’ve said, now I’d like to really say that I’ve been going through “HELL” this past 3 weeks. I don’t want to live like this with my stomach feeling all ripped up. My headaches and neck aches, which are in the back of my head and neck, most likely from the “Chiari I malformation”, have been a daily occurrence and they aren’t going away! I was off of  my Ativan for a year and now I’m back on that several time daily to help with the Dilauded side effects.  I could take the Dilauded when it was just an “emergency” medication that I used to keep out of the E.R. or it was used following surgeries. You must remember that I also had my “suckers” at that or during those times as well. My husband has had to set his alarm for 6:00 am each morning to get up and get me a Dilauded and an Ativan , just so that I am able to get out of bed an hour or two later! I used to take a Fentanyl Lollipop which was waiting in my bedside table drawer. I could open it, take it and lay in bed for about 1/2 hour and then I was able to get up. Now I have to plan it like a 2 hour ordeal. If we forget then we or I cannot even get out of bed. I do have GI issues obviously from all that my stomach has been through. Im actually surprised its not worse. I do have to have Colonoscopies every 5 years also, because of my mom’s death from colon cancer in Dec 2002. For some reason, the lollipops don’t upset my stomach or bother me in any way. I have had no side effects! I’ve honestly tried so many other pain meds that all had terrible side effects and worse! I don’t think I’ll be able to go back on the lollipops now! I’m not sure I would if I could, now that I’ve gone through the withdrawals and illness that goes with that.!! I honestly don’t know what to ask for or try? I did have something called Kadian (*extended slow release Morphine) that worked for a few or 2 years and suddenly stopped working for me. I also have something called “LONG QT syndrome”, which affects my heart and there are hundreds of meds that I cannot have due to this condition, that has only one symptom; which is “sudden cardiac death”.

Now I’m going to share with you, some research that I got from some of the websites that are the companies that make these Fentanyl lollipops called “Actiq”. I also want to share that many people have lost and do lose their teeth because of these lollipops with 8 grams of sugar in each one. The way that you get the medication to work is by placing the lollipop between my gum and my cheek. You have to pretty much keep it there twirling it loosly for 15 minutes in order to get the appropriate amount of medication. My Dentist was wonderful and thought ahead for my safety and comfort. He made special trays that molded to my teeth. I then put a flouride paste into these trays, put them into my mouth, covering all of my teeth for about 5 minutes several times per week! I had only one or two cavities since 2005, when I actually started the suckers. They were very old and needed new fillings. I tried hard to take every precaution.

I honestly don’t see why I had to have something taken from me that I was being very responsible with and doing very well with while taking them??? I only always followed my physician’s rules and advice! These past 3 years I had asked him several times if he would “help me go down off of them and take less”. He always told me that “Suzanne, I got you out of that hospital bed in the living room! I got you to be able to get up, go out sometimes and have a bit more of a life!” He was right, so I stopped bothering him. He told me to “trust him” and so I did. Here are a few of the things that I found on the website for the Fentanyl “Actiq” Lolllipops for BT pain:   “Actiq achieved off-label status as a powerful pain reliever (80-100 times more potent than morphine) and is used to treat migraine headaches, severe back pain, cluster headaches, bone pain, arthritis, neuropathies, and other situations of severe chronic non-cancer pain.”  Also, I read that “It can legally be prescribed for off-label used but cannot be marked as such.  As much as 80% of the prescriptions for Actiq each year are written for off-label use for sufferers of NON-CANCER,Chronic pain.  Soooo, then ….if I was doing so much better and had a much more happy existence with less pain because no stomach issues and honestly …less pain!!??? Why , then??? Why can I not have my life back? Its not any more dangerous it just cannot be! I don’t  understand because Fentanyl is Fentanyl and how is less of that any better for me, than Dillauded ripping up my stomach whilst my head and neck,…..arms, legs and feet feel “on Fire” along with burning nerve pain! I’m so fatigued, that I can only do something for about one hour maybe two and I’m down for the count! The rest of the day is in bed or in my “Lazy Boy” chair or on the couch!…

Well, I’ll give Dr Bullach that one…he got me “out of that hospital bed in the living room and out doing more stuff” while in the meantime giving me much too much medication …..like I have said before, I’m a lay person and I had no idea !! I wish I’d never taken any of it….I ‘ve never smoked, drank nor have I ever done any drug of any kind…At first, after the car accident, when I went to my 1st pain Dr  for 3 yrs…they’d get upset with me because I wasn’t taking the amount prescribed but was taking LESS….I cannot win….I never have taken more than prescribed either….well, we will see what happens huh? I’ll keep you posted…I have another pain Dr. appt this week on the 6th….Thank you for following ….and we will be on to a new subject very soon…If you want to read back on any of my old posts…one of the pretty good ones is “Illness Doesn’t Equal Lack of Faith”…..it’s a good one if I do say so myself….check it out if you wish….I’ll be writing soon again…not so long this time…My youngest daughter is moving with her hubby to Boise Idaho this week…give me strength. This is going to be so very hard…I miss her already….UGGH Why does life have to be this hard??? lots of love, Suzanne

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Dependence Does NOT Equal “Addiction”


One thing to know is this …Physical dependence and tolerance are “NORMAL” physiological consequences of extended opioid therapy for pain and should NOT be considered “addiction”….(*FROM “Michigan.gov)determination-quotes-2b65cd82f385b22d6dd21fd2f9ce5bf9f

Hello Luvs,

Today I have so much on my mind and I have a lot of information to share with you. Most of the information that I have is from my own support group, my own experiences and Internet sources (which I will list).  I was in a Motor vehicle accident in 2002. I have been through so many medical issues due to that accident. I have suffered through 8 years of PT/OT, 3 years of MTBI rehabilitation, approximately 10 surgeries, worsening Dysautonomia/POTS/NCS, a CVA (stroke), Mild Heart Attack and just too much to list here today without boring you to tears.  I have chronic pain and along with that, my body ended up with a Neuro-autoimmune disease called “Complex Regional Pain Syndrome Type II”. It’s also known as “Reflex Sympathetic Dystrophy type II”. Some people will call it “RSDII or CRPSII”; as there are two types of this disease: type I is from an Unknown etiology and type II, the one I suffer with, is a result of a Foot surgery in 2007, 5 years following the car accident. My type is also called “Systemic”, which means it is in my body pretty much everywhere now. That happened by accident through years of it’s continue spread.  Then following my 2nd pacemaker surgery in 2013, the absolutely wonderful Neuro-Cardiologist, who did the surgery researched the disease and found that sometimes a surgeon can help prevent the disease from spreading or going systemic, by doing an internal surgical wash of “Bipvucaine”. I was hopeful and happy. I just knew it would work. The fact that he cared enough about me to even try that, made me just feel so happy and cared about. But unfortunately, it did spread and mine is now systemic.

At first I was tested, re-tested, Neuro-Psych tested, Psych tested, Pain clinic tested and given just any and every kind of test available. I had several specialists including:  a Physical Medicine and Rehabilitation physician, G.P, Neurologist, Cardio-Neurologist, Cardiologist, Psychologist, Neuro-Psychologist, Orthopedic specialists of different types and more! I ended up being hospitalized for “Pain control” by the  G.P.that I had been seeing since 1986! When a newer physician in his office came to see me and he was quiet and kind and really seemed to “listen” well etc. I asked if I could “switch” over to him, as it was the same office. It was all good and I had been referred to a pain specialist, Dr. D. Dobritt in Michigan. He helped me for 3 years and I did everything asked of me. I even got a medical record letter from the Pain Pycshologist and Psychiatrist Dr’s that he uses, stating that I do not have an “addictive personality”. I never smoked, drank or did any recreational drugs. I barely ever took an Aspirin if I had a headache prior to that car accident!

I stopped going to the pain Dr. because he told me that he wanted me to have an “Intrathecal pain pump” surgically placed into my spine, which would drip 1/300th of the amount of oral medication I would need. But I had been in an auto accident and I was tired of “fighting” for everything I needed with them. I did win a lawsuit and I was put into “Catastrophic claims”; but still could not get them to pay for the pump. I surely didn’t have the money and my regular insurance would not pay since it was not their place to pay for auto claims. I was going to try the pump trial at least, just to see what comfort it might give me. The auto insurance said “NO” and I’d about had enough of IME Dr’s and fighting for what I needed. I gave up and quit everything finally after 8 years of PT/OT and 3 yrs of TBI rehab and about 10 or more surgeries. I think I told you already that I’d been tested by the Psych Dr’s at the pain clinic and they gave me a medical record letter stating that “I do not have an addictive personality”.  It’s true and even when the Dr’s gave me Vicodin and other meds to try and help my pain, I suffered through the pain and always took less than what I was prescribed. The Psych Dr. even wrote in my letter that “Suzanne does not want to take the medicine for pain as it is prescribed, but instead tries to get by with less”. He continued by writing that He told me to take the allowed or prescribed amount and “not to worry” about it because the Dr. has prescribed it for me.  Well, if you know me at all, I’m a person who does not like being “controlled”. I did not ever want to be feeling “controlled” by some medicine or feel “married” to my pain Dr. !!  As time went on though, I didn’t just suffer from the events of the car accident. I acquired a very painful or the “MOST” painful of all chronic pain diseases, called “RSD- Reflex  Sympathetic Dystrophy” . I was first diagnosed with CRPSII by the surgeon who performed the foot surgery. I got a second opinion only because I’d never heard of that disease before and I just wanted to be certain. I got a 2nd opinion from a well known staff Physician who specializes in Orthopedics of the foot/ankle. Then I got a 3rd opinion and 4th opinion. My pain got worse and I was forced to take the medicine prescribed for me.

When I chose to not get the pain pump, that pain Dr. told me pretty much to “get lost”. No, he did not use those words, but that is how it felt to me. I always was a good patient and did all that I was asked to do and tried to do it even taking less meds than I was allowed to take. He would not even talk to me again or let me set up an appointment, but instead, he had his physician’s assistant, Jim G., give me the news.  He called and told me to “just go ahead and have my General Practitioner, Dr. Pete Bullach Jr, take over prescribing the pain meds because he, as a pain Dr., is “under a microscope” and prefers that the pain meds are not provided via his office. He said that “Dr. could consult with him any time needed”. He told me not to make another appointment because “there was nothing left he could do for me and my pain”. I was devastated because I felt that we had a good working Dr/patient relationship. I felt believed and I believed in him. But as usual, I just did what I was told to do and kept seeing my GP and he did the prescribing.  Unfortunately as my pain got worse due to more surgeries and the spreading of the RSD/CRPSII, and the new diagnosis’ of R.A., Chiari I malformation, Degenerative Disc disease and now Hypermobility syndrome III and more, the doseage was just increasing.  Dr. Bullach just increased my pain meds and offered me no other future or help for the future.

The past 3 years, I was asking him to take me off or down from the pain medications. I was afraid that I was taking too much even though it was helping. He told me time and time again that I should “just let him worry about it”. He also told me that the medications “got me out of the hospital bed that was in my living room” and I “don’t want to go back to that”! He told me to “let him worry about the pain meds and just continue to do what he said”. Every time I would bring up trying to go down in doseage, he would tell me to “just let him worry about it”! He even told me that he had a plan worked out that when he felt ready for me to go down on my pain meds, that he would just put me into the ICU at the main hospital. He would “knock me out” for a few days and they’d watch me carefully because of a previous CVA and heart attack in ’05 and ’06. When I awoke, I would be “off of the medication” and not have to go through any withdrawls, or at least not remember or feel it at all. I would be safe and watched in the ICU. In no way did I feel like I was an “addict” or a “bad person” at that time. I felt that I was doing everything I was told to do by a Dr. that I trusted with my LIFE and my husband’s LIFE!

Well, from my couple of previous posts about this subject, you can understand how totally betrayed and flabbergasted I was in December 2014, when with only 2 days notice, I was told that Dr. Bullach “was leaving and going to work at an Urgent Care an hour away in Jackson, MI”. Later I’d find out that he’d known about his new position since October 2014, but failed to share that information with me and many other of his patients.  In October I had even brought him a letter from my medical insurance company, stating that they would not pay for my pain meds any longer in the doseage that he was prescribing, after March 11, 2015; unless a certified pain Dr.agreed with his treatment plan. I brought and showed him that letter in October and he told me “not to worry at all”.  He said that he “would personally speak to my old pain Dr., D. Dobritt, and he would send a letter explaining everything to him and some of my records that he would need.”  He told me that I had nothing to worry about, that he would “take care of me and of everything”.  When I walked into his office that December day, in 2014, you can imagine how blindsided I felt.  Then later to find out that he was investigated by Federal marshals or agents (I found this out from a legitimate source or several actually)for over medicating many of his patients and he was actually “fleeing” to get out of trouble before trouble came to him first!!  He fled to an Urgent care facility where he’d be incapable of writing such prescriptions again. He lied straight to my face telling me how he was “working too much and he missed his sons and he was going to work someplace else to be able to free up time and be with his wife and kids more often”. It was a bold face lie, he betrayed me and it feels really awful.

I went to the pain Dr. appointment on Jan 2, 2015 and in my previous posts, I think I already explained what happened. I told him that I did not want to and would not go to a “Detox” clinic. That was not what I deserved after being told even by him several years ago to “trust him” and “take the meds prescribed” and that “it was OK and it was safe”. I am a strong and motivated person. I’ve been through alot of terror and frightful experiences, including painful ones. I can do this and I will do this. My husband called and made a second appointment for Dr. D. Dobritt, the pain specialist. He told the secretary that I’d been going down on my own, with the pain meds and that I’d gotten down at that point, at least by 75% of what I’d been taking at the time of my visit one month prior!  I went to my scheduled appointment that was at 8:00 am on Feb. 16th, 2015. If you know anything about pain, you know that is very very early for someone who has a hard time just putting their feet on the floor in the mornings, due to extreme pain. Add into the equation 75% less pain medication and you have a woman in some real pain, but a determined woman who was doing everything on her own with the love and support of her husband. When I arrived at the pain Dr. appointment, they let me sit in the waiting room for about 1/2 hour, only to find out that “the Dr. will not see me”!  What??? Why?? Why would they let me make the appointment? I smelled something rotten going on there and it was an awful feeling.  I had some young office girl tell me that the Dr. refused to see me “unless he had a letter signed from the DETOX Dr. (*Dr. H. Malinoff) that he had recommended that I see at my last visit”.  I told the girl that I’d already gone down on my own 75% or more! I told her that I didn’t need anyone else’s help. I was not an “addict”, I would Never take Methadone or Suboxone and after researching that Dr. who Dr.Dobritt wanted me to see, I realized that he was not for me! A person who is on SSDI for PTSD and who’s suffered at the hands of numerous “bullies”, just did not need another “bully” (Dr.) in her life! I read 16 reviews of this physician. ALL 16 were really bad reviews! People said he was “Dr Jekyll and Mr Hyde” and that he “put them into tears by calling them names”. I don’t go by reviews usually. I know that disgruntled people or patients will write bad things when they don’t get what they want sometimes or when they are angry! I don’t put alot of heart into what I see usually when others write bad things like that about Dr’s or places even. I know that there are disgruntled pain patients out there who want more meds and when they don’t get them, they go to the computer and write nasty things about the person who didn’t get them what they wanted. I know this is true of SOME, but not of ALL!  I know this because I am one of the valid/honest writers & readers not asking for anything except the truth and peace.  I’m not being vindictive in any way.  This is just a venue to allow my readers and other pain patients hopefully, who are like me, to know the truth of what has happened to me and what can happen even to honest and good people.

This “detox” Dr., as I read more about him on his own website; told of a story how he broke his foot and “walked on it for 3 months.” His wife finally forced him to go to Orthopedics and he had a surgery. He tells of how he “went through all of this without taking any pills for pain”.  He also stated how if someone wakes up in the morning, puts their feet on the floor and they have “no pain”…then they should “look in the Obituaries, because they should be dead if they have no pain whatsoever”!  I could not believe this was a Dr. who was revered by this other pain Dr. and the physician in the GP’s office who took over a few of Dr. Bullach’s patients!  This guy who takes people off of pain medications from the moment they walk into his office, and puts them on a program of Methadone or Suboxone or worse; and then forces them to go to 12-step programs can NOT understand what living day in and day out, 365/52/7/24 in chronic intractable pain is like?  Having a broken foot for 3 months and it “hurting when the weather changes” is still not the same as having: systemic CRPS II, RA, OA, Chiari I, Long thoracic nerve pain, bilateral patella femoral pain, Lumbar and Cervical Radiculopathy, Polyneuropathies, and Degenerative Disc Disease all at the same time!! He does not know what PAIN truly is.

A true pain patient like myself tries hard to hide it. This is sometimes mistaken as “not really feeling that badly”. We try hard to hide our daily struggles with pain because of this exact situation. We try to hide it because nobody really understands. Try to think of a time when you were in really bad pain, then multiply the intensity by 10 times or more! Then imagine having that intensity of pain day in and day out like I mentioned above for 365 days per year, 52 weeks per year, 7 days per week and 24 hours every day without relief or without very much relief! Try next to imagine this pain is never going to go away! It’s going to be there for the rest of your life. That kind of pain is hard for anyone to imagine, but it’s nothing like a broken foot for a few months! Also, taking medication that several Dr’s all knew you were on for 12 years or more and doing exactly what you are told by your physician, your GP, does not make an “addict”.  Just because I put on make up and try my best to look as good as I am able, does not mean that I feel wonderful at all!

I feel as though I am “stuck” in a body of which I have no control. I have to go each and every day with nobody truly understanding what I go through. If I talk about it too much, then nobody wants to be around me. If I don’t talk about it, then they think it’s not there. It’s a no win situation even when I visit the Dr’s office. They want you to give them a Number of how you feel, on a scale from 1-10, with 10 being the worst pain you have ever felt.  First of all, that would be different for everyone because maybe the worst pain you’ve ever felt was an ingrown toenail (and those do hurt, by the way!)?? What if the worst pain you have ever felt was childbirth? At least you get a “prize” at the end of it and there IS and END to it! So you see that cannot work for everyone. Just like my pain is in various places throughout my body. My shoulder may be a 3 today but my lower back may be an 8! But they only want “ONE” number to describe your pain that day!!! Geesh!

I’m luckily getting some guidance from a GP that I’ve known since 1986. But he really doesn’t want me for a patient. He feels “stuck” with me because my GP left in a Hurry and I had no place to go!   I refused to go to a pain /detox Dr. who wins prizes for writing these “great articles” about how he “helps” people with pain get off of their medications. This detox Dr. gets articles in “Detroit Hourly” magazine for his “greatness”.  Well, talk to the patients because anyone can be “book smart” and write an article with precision and big words. But not every Dr. can have empathy and accept a challenge with dignity and kindness. That is what I want, a physician who will treat me with the respect that I deserve. One who will look at me and not my husband, when I bring him into my appointments with me. Lastly, I want a Physician who will listen to me and believe in me as much as I believe in myself.  It’s taken many years for me to believe in myself. But I know that even though this is awful, painful and very difficult; I can do it!  But then what next? I will always need something for pain! What do I do as I decrease my pain medicine dosage even more? The pain is increasing and my mobility is decreasing. I can now do something for an hour before I need to stop and go home to rest. Prior to this time, I could at least go out for a few hours before having to go home and rest.

Lastly, just because a pain patient can do something one day, such as go shopping for 2 hours, doesn’t mean that the next day or next week they’ll be able to repeat that. Chronic pain is such that it is just as confusing to the patient/sufferer as it is to their friends, family and physicians. It is like “hot and cold”…..one day we can do something and the next day we may not be able to do it. I may wake up tomorrow and not be able to “go out to lunch” as I had planned. Friends and even family get upset when we cancel plans. Each day is different and we never know how we will feel. I try very hard to be “normal” and chronic pain is hard to understand if you do not suffer with it. The Dr’s who are “pain” Dr’s have not suffered from it, for the most part. They don’t know what it feels like, they only know what they learned from a book and from their patients. If they are a good pain Dr., they will learn from their patients.  Remember, nobody WANTS to feel this way. Shame on the Dr. who sent me away because I wouldn’t go to the “detox” Dr. whom he wanted me to see! Shame on him for not helping someone who he’d already known, trusted and believed at one time and for 3 years! He wiped his hands of me and didn’t want to be involved with helping someone else’s “mistake”.  Just shame on him! The worst thing that you can say to a chronic pain patient  when they are taking pain meds, is to say that they have a “drug addiction”. People who do not have a history of addiction or problems with drugs, and who are living with chronic pain, like myself, do NOT WANT to take these medications or narcotics!! WE/they need them to function and get through the daily activities of living. Our Body is physiologically dependent on them and we are tolerant of them.  But a definition of “addict” is not equal to “someone in horrible chronic pain with a legitimate chronic pain disease who has been prescribed Narcotics / Opioids to help ease their pain for years and then suddenly someone decides it’s time to take them away and send them to Detox!

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