Trials of a Chronic Pain Patient…..

Trials of a Chronic Pain Patient…..

imagescanandwill  Hello Luvs,

Have you been betrayed by your Dr? Do you feel like a “common criminal” because you are a legitimate chronic pain patient? Then please read on:

So if you follow my blog at all, you know that my GP, or my General Dr. of the past 13 years just quickly left the practice he’d been working at for many many years. I had an appointment in October 2014. I showed him a letter that I’d rec’d from my insurance company stating that I must go to a pain specialist and that he/she must agree with my GP’s treatment plan; in order for them to continue paying for my pain medications. The letter also stated that If the pain specialist did not agree, they would stop paying for my pain medications on March 1st, 2015. My October 2014 appointment was only for the purpose of making sure my Dr. would help me arrange the pain specialist appointment, send him a letter & call him to explain my extensive and unusual situation. My GP, had been the one person I trusted other than my husband of 18 years and my Psychologist of 15 or more years. I don’t trust many people due to my longstanding history of being abused and being a survivor of domestic violence. That is a story for another day, but you need to know why I feel so betrayed!

Since my car accident in 2002, (*a man ran a red light and I was injured terribly), I have endured so many injuries, surgeries; including 2 pacemakers, along with suffering a Mild Traumatic Brain Injury (3 yrs of TBI rehab), a stroke and a heart attack! Then to end up in 2007,after a foot surgery with CRPS type II. The CRPS II then spread and has been systemic since after my 2nd pacemaker surgery, when they found that my 1st pacemaker had worn a hole right through my pectoral muscle; which then had to be rebuilt.¬† My excellent Neuro Cardiologist researched RSD/CRPS and found that sometimes an inner surgical wash of “Bipvucaine” (*which he did do) may help stop the spread of the disease. At or about my 6 week post op checkup, I found out that my CRPSII did spread and it is systemic. My pain is very high and I have several other pain illnesses and auto-immune/Neuro autoimmune disease.

I had been to an excellent, well respected and kind pain Dr. He has a good bedside manner and is very intelligent. He tested me in every way possible. I followed through with whatever tests he wanted and I did all that he asked of me. I had several Epidural blocks, trigger point injections, Cortisone shots, Biofeedback and more. I was tested by the pain Dr’s own Psychologist and Psychiatrist. They concluded that I did NOT have an addictive personality. After trying many pain medications which either made me ill or that I was allergic to, we found one that actually worked well for about 2 years. When all else failed, I was offered an intrathecal pain pump; but refused it.¬† I am a smaller stature person and could not imagine something the size of a “hockey puck” inside of my gut & under my left rib cage forever!.¬† Finally, I was put on a pain patch for 24/7 relief and pain lozenges for breakthrough episodes. Because I was only receiving pain medicine and needed it in order to try to have any kind of quality of life whatsoever; the pain Dr. referred me back to my GP, who was Dr. Bullach. He¬† told me that he would be¬† “the eye in the middle of my storm”. He would prescribe all or most of my medications. I lived with those meds for the first 3 to 7 years. Finally, the pain stabilized and I stayed on the same dosage for the next 5 years.

I started out after the car accident, being in a hospital bed in my home or on my couch as well. I could not even move without excruciating pain. When I got to the point where I was put on the pain meds that Dr Bullach gave me for those 10 years, I was able to do a few things. I was able to get out of the house. Every time I would ask Dr B. to reduce my level of pain meds, he would tell me “No …you let me worry about it. You don’t want to end up back on that couch or hospital bed again.” He told me that “I should not worry and if/when the time came & I was able to reduce my pain medications, he would “put me into the ICU so that I wouldn’t have to go through anymore pain”. He told me that I would “wake up and it would be over without my having to go through feeling any of the withdrawals.” But every time I would ask him to let me reduce the amount, he just told me the same things. I trusted him and He told me that he was “the eye in the middle of my storm”. He told me not to worry about anything! I did trust him, but still I worried.Though I’m very naive, when it comes to medicine because I never drank alcohol, smoked cigarettes,pot, nor had I ever taken any prescription pain or street drugs in the past; prior to that car accident. I am a lay person and had no idea what a good amount or a right amount of pain medication is. I trusted my Doctor for that!¬† I wish to reiterate that I asked him over and over again, to let me reduce the pain meds.¬† I acquired RSD/CRPS in 2007, after surgery on my foot. I have it as well as the other car accident injuries and surgeries. Later, the RSD/CRPS II spread to my full body.

So….in going back to that letter that I received from the insurance company, I took it to my ex GP, Dr. Bullach in October 2014. I felt it inside of my heart and soul that very day, that something was not right! He looked me deep into my eyes and said “you need to just see a pain Dr and he will agree with my treatment and its just a formality.” I told him that I was afraid….scared and could I go back to the same pain Dr. that I had known, liked and been to for several years prior. He said I could go to that pain Dr and because I was crying and afraid, he absolutely promised me that he would¬† call and personally speak to the pain Dr. and send him everything and /or anything that he may need in order to help me get my medications continued and paid for; in order to keep my pain at least at the level it’s been at,so that I could continue to have some sort of a life outside of laying on the couch in pain all of the time.

When we left that appointment in October, I told my husband “something was not right today”….I said that it felt weird and different. I told him that Dr. B. looked at me so oddly as if he wanted to say something but instead he was robotic and went about his business. I took him at his word when he said he “PROMISED to call that pain Dr. and send him a letter with all of the info he might need, in order to help me.

I made my pain Dr. appointment for Jan. 2,2015. But prior to that appointment, I had one more appointment with Dr. B. and had no idea what was in store for me. Two days before the appointment, with no prior knowledge; I received a letter from the other Dr. in the practice, the one who actually owns it.¬† It was very short and just said something like “Dr Bullach will no longer be seeing patients in our office as he accepted another position at an Urgent Care in another community, Jackson, MI; about an hour away”!!! I was not only shocked and devastated, but afraid and just couldn’t stop crying. I trusted another human being and yet another human being broke that trust! All I could think of was “what is going to happen to me now?”

I went to my appointment, the last appointment with my Dr. Bullach. I spent the whole entire visit for about 40 minutes, just crying. They never examined me, nor even touched me. I didn’t get my blood pressure checked, my heart wasn’t listened to and I have Atrial fib, Long Q.T. and a pacemaker.¬† The Dr. did nothing that day (he did nothing the prior appointment as well, which I also thought was odd). It was as if he’d just given up on me and didn’t care anymore. He would not give me my prescriptions that he’d been giving me for the past 10 years (although no increase the past 5 yrs). He told me again, “not to worry because the other Dr. in the practice would take care of me just the same and he would prescribe the same meds and everything was going to be O.K”. The medical assistant, “C.” even told me those exact words. She even told me that “if the new Dr. didn’t write the scripts the same way Dr Bullach did, that she would take him into the hallway and explain to him what to do and how to do it”.¬† They all told me “not to worry” and “my treatment plan would stay the same”.

I went to my pain Dr. appointment on Jan 2nd, and he was surprised to see me. He had no idea why I was there. He had received ZERO information from Dr. Bullach !¬† There was no letter sent, no phone call absolutely NOTHING came from that office. Finally the pain Dr. decided to call that office and he spoke with the other Dr. there. He came back to tell me that the Dr. I’d trusted all of these years, had “over medicated me up to many many times the normal amount”!! I was in shock as was my husband.¬† I was angry and afraid!¬† I suffer from PTSD which is one of the health issues that has rendered me “disabled” since 1998! The pain Dr. and the other Doc at¬† my GP’s office spoke and¬† “THEY” decided that I should go to a brusk,¬† physician who doesn’t believe in pain medication except to detox people! He detoxes everyone and puts them on something else like Suboxone or Methadone as if all¬† legitimate pain patients with HUGE list of pain diagnosis’ like mine, are just equal to a common criminal. I researched that Dr. and we spoke to the Dr. who owns the practice where my GP had treated me for all of those years.¬† My research proved that the “detox” pain Dr. does NOT believe in Opiods, Narcotics even for legitimate pain issues, diseases etc. He has 16 horrible reviews on several “rate your Dr.” websites.

When my husband was on the phone with the Dr. who owns the practice where I’d been going all of these years, I could hear him yelling over the telephone while my husband was talking to him. He was angry and yelling loudly. He said that “Federal Marshals came into their practice, and that my Dr. B. over medicated many other patients, not only me! I’m furious to say the least. But I also heard him say that he could no longer see Dr Bullach’s regular patients or prescribe meds for them any longer.

I am feeling so betrayed and hurt and afraid. He left me on a high dose of medicine and gave me no choices except to go to a scary place and have all control taken from me. Let alone, all control taken from me by a brusk, angry type of Dr. (according to many many of the rate your Dr websites!).¬† My psychologist and everyone who truly knows me, says that is the very worst thing anyone could do to me. I suffer from PTSD and I’m very afraid of many people. I’ve been abused and assaulted and even sexually molested and I was absolutely NOT going into some unfamiliar place and lose all control!

Well, that was then, on January 2, 2015. Even though the pain Dr. wont see me yet, or have anything to do with me until or unless I’m down to a very low amount of medications for pain. I have done it myself and have tapered off of the meds all by myself. In the past I have had a stroke and a heart attack. I have a pacemaker and I have Long QT and A-fib. I have several, awful,terribly painful illnesses but I still am doing it myself!¬† My “stand in” GP, who sort of “took over” when the other guy got in trouble and left; and who is not happy that he got “stuck” with me as his patient, said that he “got stuck with a mess when Dr Bullach left him with all of these pain patients that the Dr. just kept giving meds to. How could a doctor do this without caring about “US” as real people? Why would he do this to me? I want to live a good life! I’m a mother, wife & grandma and I have a lot to live for. I have a loving and wonderful husband. I’ve not ever done anything illegal or immoral. I’ve never hurt anyone on purpose and I was always so afraid of dishonoring both God and my own father /parents; therefore I just was always a “good girl”. I stayed and grew into a “good woman/person”. I never even took an Aspirin for pain before that car accident, when I would get headaches in the past!¬† Would he have done this to his wife or his sister? I just will never understand and I truly feel so sad and betrayed by him.

I have been to the Neuro Cardiologist who said that while I was there for my appointment in January, I was diapheretic *(sweaty from tapering the medications), and my heart was in Atrial fibrillation.¬† Luckily I have a pacemaker. The Atrial fib is just annoying. I’m being paced with a dual chamber pacemaker. I have a cardiac monitor next to my bed which is watching my HR and BP¬† 24/7/365. It’s connected to my pacemaker via some kind of air waves, making the A-fib a bit more safe.¬† I’m also on Coumadin, which¬† helps with the blood clots that Atrial fibrillation can cause. I am keeping track of my tapering and I’m doing this all by myself. My husband is awesome and he’s there for me. He’s helping me by reminding & writing it down with me. I will show everyone that I am strong and that I can do this.¬† If you are not an addict…if you are only taking what is prescribed by a legitimate Dr. and you are a good, person…then why not be able to take what helps you the most and gives you some semblance of a life? Why treat someone like that as though they are a “common criminal”??.¬† I only went to one Dr. for all of my medication. I’ve only gone to one pharmacy for the past 26 years! and I asked for the past 3 years, for help in reducing the amount I was taking. I am now down to 1/3 of what I had been taking and I will find someone to help me from now on. I will need something for pain for the rest of my life. I have REAL pain illnesses and real diagnosis’.

The above is just about me and my own story. Maybe some of you have been through it? Maybe you know of someone who has a real chronic pain illness? I’ve done some research online, if I refer directly to something specific that I’ve read, I will tell you where I found it….otherwise it is just general research and my opinion mixed together with my own experiences. If I can help just one person who is suffering, then I won’t be suffering in vain. It appears that Opioids can be a safe and good treatment for some people with non malignant chronic pain. From reading about research I’ve found that there are risks and benefits to the use of Opioids for chronic non malignant pain. The potential risks could be abuse and awful side effects. These can be tolerated and/or managed at least. I think if you have tried all of the things like I have tried, including trigger point injections, epidurals and nerve blocks, TENS, biofeedback, and you just get minimal improvement and only for a little while; then maybe it’s worth a try to be considered for long acting Opioids. I also have heard that if you have nerve pain and you are unable to take antidepressants or anticonvulsants, then Opioids are worth thinking about for these patients. They usually recommend that when someone is given these meds, they should be willing to start out with low doses and start out very slowly.¬† Hopefully their pain will be relieved if they can tolerate the side effects. People like me, who suffer from multiple chronic pain issues and horribly nerve pain illnesses, should be able to have access to any kind of treatment that has any possibility of improving their symptoms.

About 3 years ago, I started telling my GP that I wanted to reduce the dosage of the pain medications I’ve been taking since 2005. It seemed to me that no medication should be continually taken without having full benefits. I asked many times and each time he would tell me that I didn’t want to “end up on the couch in my living room again in horrible pain; or be in the hospital bed again, like I’d been the first 3 years following the MVA. He was the Dr. and I was the patient so I relented and just listened to him and trusted him. A person who is “addicted” psychologically does not ask to have their pain meds reduced because they are afraid of feeling “married” to it. I didn’t ever like that feeling of having to take something or else I would get sick or sicker! That frightens me and tapering the meds, is the best and safest way for ME to do it. I don’t suggest it for anyone else. You need to check with your own Dr’s and do what they tell you to do. But since the Dr. who knew me very well, turned out to be a bad man who betrayed me and lied to me….well…now I’m back to not trusting anyone again! I know that I do not “crave” the medication in my mind. Psychological dependance is confused quite often¬† with serious substance abuse and the literature is quite confusing. The Diagnostic and statistical manual, edition IV, (DSM-IV) defines substance dependance as a more serious form of substance abuse. This more serious kind of substance use is characterized by tolerance, withdrawal, overuse, craving, inability to cut down, and excessive preoccupation with respect to obtaining the substance. But substance abuse is characterized in the DSM-IV by use leading to failure to fulfill roles/responsibilities, use in hazardous situations, legal problems resulting from use and use despite negative consequences.¬† Other studies of chronic long term opioid therapy found that all patients who developed problems with opioid use had a “PRIOR HISTORY OF SUBSTANCE ABUSE”! (hence…NOT ME!)..

There is a lack of any true quantity of research regarding the data for long term opioid use. Many Dr’s prescribe opiates for their chronic non malignant pain patients. Mostly because the alternative treatments for long term management of pain most often fail!! From my readings and research lately, I have found that the opiates usually work for awhile but not always so great for long term use. Sometimes they seem to work in long term situations but I guess there needs to be more evidence and research on that idea. As for me, I feel like it worked for my pain, since I have so many places with nerve pain and so many issues with long term pain. I think it should’ve been reduced a long time ago, because I feel a difference already. I’ve tapered down to 1/3 already in 3 weeks and now when I take the meds, I can actually feel it working after just a few moments; the break through meds. Before I started tapering, it seemed as though I had a constant ongoing “everywhere” pain that felt firey. I just continued my prescribed regimen because that is what I was told to do and each time I asked to stop and /or reduce the amount or try something else, I was pretty much told to “shut up”. I wish Michigan, the state in which I live, could adapt the state of Washington’s patient assessment and care guidelines for the use of opioids for chronic non-malignant pain. You can find this at: http://www.agencymeddirectorswa.gov/Files/OpioidGdline.pdf.¬† In short, it explains how It includes limiting the dose and amount prescribed, using urine testing for illicit drug use and treatment compliance and asking about alchohol, tobacco and drug use history prior to starting any opioid treatments.

Everything I’ve learned and from my own experience tells me that there is a low risk of addiction in naive chronic pain patients. Someone like me who has never smoked anything nor been a drinker of alcohol, has a very low risk of addiction. I think it is downright hurtful and abusive in certain ways, to keep medication that can help someone’s pain, away from them. What about Dr’s who withhold opiate anelgesics? The problem again is that we just don’t know how long they are effective? In (Kalso et al, 2004)¬† it was proven that opiate analgesics¬† effectiveness can be sustained for up to 8 weeks. The problem is that I don’t find any studies that prove their effectiveness after the 8 weeks time period is finished. Also it was shown with lab animals that dependance and pain can possibly get worse with long term use of opioid analgesics. Another issue is tolerance, though this hasn’t been shown in a clinical setting. Increasing dosage to maintain pain control is very common. Many animals in studies do show tolerance (e.g. see Chan et al, 2007).

Sometimes something called “hyperalgesia”¬† can develop when long term use of opioids happens. This really can mess up and complicate things for the patient and the Dr as well. This was proven¬† and there is evidence suggesting that this may happen in pain patients on daily opiate therapy (Cohen et al, 2008).¬† Opiate drug addicts and true pain patients are very separate sets of people. I never touched drugs or alcohol and I’ve always striven to be a person “on the straight and narrow”. I’ve never had any trouble with addiction and I was tested during my time as a patient at the pain management clinic. I was tested by their Psychologist and Psychiatrist.¬† Their tests proved exactly the same as what I had always known to be true; that I do not have an addictive personality.¬† In the clinical studies referred to above proved also that opiate addiction due to appropriate medical management of pain is rare! Doctors have a hard time because they feel that it’s difficult to know who is faking pain just to get a prescription. However, the person who is lying to get the meds is already an addict, therefore the Dr is not creating one!

As I mentioned towards the beginning of my post today, more research is needed to decide which pain patients would benefit from treatment with Opiods.¬† I feel that anyone who is tested and proven to not have an “addictive personality” and who also has proven to be a true chronic, non malignant pain patient; with real HIGH pain health issues/conditions/diseases should be given a chance. I believe also if a patient is asking their Dr. to reduce their opioids because they are willing to try less, then the Dr. should listen to them. Maybe they will go through some tapering withdrawals, but nothing intolerable hopefully. In my case its not been fun but now I’m at the last third of the tapering process. I CAN do this and when I’m finished then I hope to find some respectable, reputable pain management specialist who will welcome me to their practice and help me stay on a maintenance dose. I’ve already notice and noted that I can now feel my “real” pain in the places where there are real problems. When I take a breakthrough medication, I can now truly feel the pain lessen; where before when I was over medicated, I felt a constant burning, nagging 6-7 out of 10 on the pain scale pretty much constantly. I was afraid to NOT take what my Dr. prescribed, thinking that maybe it would worsen to a 9 out of 10, which I didn’t want to tolerate. I can now feel as I’m tapering down on my own pain medications, that when I “over do” my activities a bit, then my pain goes up. When I’m laying “low”, the pain seems to be held at bay a bit.¬† This has always been true but when I was on higher dosage and over medicated by my Dr., I felt a constant, more steady nagging “all over” pain. I can feel a distinct difference in my pain now.¬† I know that I didn’t and don’t have hyperalgesia, because my dosage stopped going up 5 years ago but my pain did not increase until my RSD/CRPS II, spread to “systemic” in 2013, and I acquired Lymph edema in my left arm and pain/swelling in my left chest area as well.¬† My pain was semi controlled and I could do a little bit more on a good day just as I could do a little bit less or nothing much, on a bad day. But I still kept wanting to lower my dosage.

This has turned into a mess for me and for my life. I’m afraid that I’m going to be in horrible pain for the rest of my life? Please…anyone with any ideas (**other than “detox” for a me, a person with no history of abuse of any kind) on where I can go? What I can do? Please leave kind comments or email me if you like…thank you for reading my long post today. I hope I’ve helped someone today!

prayerchronicpain-circle3

This is me Doing an ASL Cover to the song “Shake It Off” by Taylor Swift


When life gets me down…when people are mean and the world seems tough to get thru each day because of my pain and other “stuff”. I do sign language for “fun” because I used to be an Interpreter for the Deaf until I was hurt badly in a car accident.¬† Now I wear 2 hearing aids and have a MTBI. I am in chronic pain 24/7/365…but I do what I can and how I can and it’s still fun…(except for the pain afterwards)..thanks for watching…

Trust Betrayed!! (*When The Dr. Betrays The Patient)

Trust Betrayed!! (*When The Dr. Betrays The Patient)

4b275fd59724c74cea37eb5be066c348determination-quotes-2Which Pain Is Worse? The Physical or the Betrayal?

canandwill

Hello Luvs,

I wanted to write a bit about whats happened with me and what is going on so that others like me, with Chronic pain, several Chronic pain illnesses and nerve pain Diagnosis’, don’t get treated as I’ve been treated. If I can help even one person with this post, then it will be very worth it to me . Now, the short version of my recent saga is this: I was in a MVA in 1984, hit by a drunk driver….causing whiplash and the beginning of Degenerative Disc Disease. In 2000, I fainted (unknowingly I had Dysautonomia already at that time). My husband was inpatient with Peritonitis following a burst intestine. I was running from the hospital to home and back again to make sure my husband and my two young daughters, ages 8 1/2 and 11 yrs old were cared for and felt loved. I was doing it all alone with no help from any family or friends. I was doing laundry at midnight and I was exhausted. There is a metal pole in between our washing machine and the dryer. I bent down to put the clothes into the dryer and I hit my left frontal temple on the metal pole. I felt an “icey” feeling go down my face and I fell to the floor. No other adults were home and I was in the basement, 2 floors down from my sleeping daughters. I awakened some time later but unsure of the time frame. When I awoke on the floor of my basement, I could no longer feel the left side of my face. When I smiled my left side did not; just as though I’d had Novocaine at the Dentist office. I couldn’t do anything for myself because I was alone with my 2 children and my husband was very very ill and possibly could have died and he was in the hospital. My youngest daughter was a champion Scottish Highland dancer at the time. She was being judged for “medal testing” by a judge brought in from Scotland. I paid a fee, she was very excited and had worked very hard for this chance and I could not let her down. Also, afterwards I was going to the hospital again to see my husband.¬† I had to just make sure that I did not smile so that my girls didn’t notice my mouth going down on left side. I was a little scared and didn’t feel so great, but I drove both of my daughters to Royal oak or a bit farther, for the medal testing. My youngest was tested and did marvelously!! She was being judged for Silver medals and she got her Silver medals! It was awesome!

I brought the girls home afterwards and had a neighbor watch them while I went to see my husband. On the way to seeing my husband, I stopped in at an Urgent care to see about my face and head. Also because my eye was not looking right and it was “wandering”.¬† The urgent care put me in an ambulance and took me to the same hospital that my husband was inpatient at.¬† I was livid and didn’t want to go. My car was left in the parking lot and we honestly had no one to help us! What was I going to do? I was starting to get admitted and I left against medical advice. I went to my husbands room and saw him and I was in luck that another friend was visiting him at that time. She offered to take me back to my car. Later on, I went home and the next day I went to see my Physician.¬† He sent me right away to see his Neurologist friend. I had a CT scan of my brain and an EMG. I had 4 inches of nerve damage in my left face and I had brain swelling. I was given a “Medrol dose pack” and then nothing else ever happened from that incident. The fact remains that my smile still goes down when I’m tired or sleeping. My eye wanders in most photographs taken. My face has become asymmetric because of the nerve damage. Most people cannot tell so much, but a Neurologist that I saw did notice and of course, I can see it. My husband can see it as well.

Then, in 2002, I was again a passenger in a MVA. I was unconscious for 25-30 minutes. I suffered a MTBI or “Mild Traumatic Brain Injury” and had to go to a brain injury or TBI rehab ctr for 3 yrs outpatient. I had 12 surgeries including: 2 pacemaker surgeries (different in that the first was placed deep into my pectoral muscle and then 10 yrs later it had worn a hole right through my pectoral muscle and I needed a 3 hour muscle rebuild surgery and then to replace the pacemaker….this caused so much trauma to my chest, left arm area that my RSD/CRPS went straight to that traumatized area; even though my Neuro-Cardiologist did research. He learned about doing a “Bipvucaine” internal surgical wash to head off the spread of the RSD/CRPS. He really tried but it went Systemic in 2013. I ended up having knee surgeries, shoulder surgeries (with screws put in), left facial surgery, foot surgery (where the RSD/CRPS type II started) and more. I had two torn meniscus’, two torn rotater cuffs that went into adhesive capsulitis and so much PT and OT for 8 years that it seemed endless. I ended up getting an “ENG” test which showed my Cerebellum was damaged and it was injured in a “central dysfunction”. I fell often due to balance issues and still do today. I had to have special prisms in my glasses as I see halo vision, with severe dry eye and I have a Convergence insufficiency. I had to get 2 sensory neural hearing aids also as a result of the Traumatic brain injury; due to moderate hearing loss in both ears but left worse than right. So much was different including that I went from never even taking an aspirin for a headache to having to be on a pretty good amount of medications for “chronic intractable pain”. I had no idea that¬† I was entering a “whole new ballgame” in my life. Meaning that I was in a hospital bed in our living room for the first 3 yrs because I tried many pain medications and they all made me ill or I was allergic. I went to a pain Dr. who gave me:¬† trigger point injections, epidural blocks,other injections, biofeedback etc…I went through their psychological testing to see what kind of personality I was or was not. I passed with “flying colors” and was told that I did not have any signs of having an “addictive personality”. I was offered an intrathecal pain pump, which is surgically placed under the rib cage near the abdomen. It is or was, the size of a hockey puck. It is something that gets filled monthly with Morphine or other kind of pain medication to keep you comfortable on a regular basis. I already had a pacemaker and did not want something like that seemingly uncomfortable appliance inside of my gut forever.

Next, I was put into the hospital for pain control in 2005.¬† This was 3 years after that horrific car accident had changed my life so much. I met my physician’s new office physician. I thought he was a big “teddy bear type” personality and seemed very patient and kind. Being a survivor of abuse, domestic violence and suffering from PTSD and actually on SSDI partially for that reason, I needed a General Dr. with that kind of¬† bedside manner. The other one I’d been seeing was also kind, but he was very “quick moving” and didn’t take the time listen very well. Along with the fact that he had a story for everything, and this was just not “funny”.¬† Finally, I¬† tried what he told me to try and it was a combination of a pain patch and a pain lozenges, which had only been approved for cancer pain and for the horrible burning pain of RSD/CRPS; which I’d been diagnosed with by 4 different Physicians. I just didn’t know what it was and didn’t want to believe it. I had never even heard of it before. Well, this combination of medications is the first thing that didn’t make me terribly ill and it got me off of the couch after 3 grueling, long years of being pretty much immobile and not really going anyplace except to the Dr’s and to the rehabilitation center for TBI rehab.

That was 2005 and now we are in 2015 and my dosage was increased now and again up and until about 2010. After such time, I never had to have another increase and my pain, though still apparent, was bearable. I was able to go shopping with a friend for awhile. I was able to go to my daughters wedding. I was even able to go to Disney World in Florida in 2012, to celebrate my youngest daughter achieving her Masters degree! Of course, we took my wheelchair and I used that for the parks, and I had a cane for looking in the smaller stores.¬† But I could go!! I did go!! It was a dream come true; and although I was still in pain, I could feel it and it would get worse the more active I would become; I still went!! I had asked my Dr., my GP, to “help me get down on a lower dose of these Narcotic pain medications”. He kept telling me that I “don’t want to end up on the couch again or in the hospital bed”. He would tell me again and again “not to worry about it” and to “let him worry about it”. I would give up asking and go about my “half life” that I was living, though still better than living in my front room on a hospital bed.¬† Then a few months later I would bring it up to him again. I would say “Dr. (Pete) Bullach Jr., I am afraid of being on this kind of medication for so long. How am I going to get off of it? When can I try to take less? What can we do?” Dr. Bullach Jr. would say to me again, “let me worry about it and when the time comes, I will just admit you to the regular hospital and we will knock you out for a couple of days and get you off of the meds and start with something else”. Whenever I would bring that up or ask him about “WHEN” we could do that, he again would tell me “not to worry about it” and to “let him worry about it”. He always told me that the medications that I was taking was fine for me and for the amount of pain that I was having. He told me that he even “fought it out” with the “medical director of my insurance company” and he told them I needed it and why and they accepted it. He just kept on telling me that I “didn’t want to end up on that couch again, like I had been for 3 years, or the hospital bed either.”

So …in September 2014, we got a letter from my insurance company, telling me that as of March 1st or so, they “would not pay for my pain medication any longer, unless I went to a pain Dr. and he/she agreed with my Dr. Bullach’s treatment regimen.”¬† Of course I got frightened because I do know that if taken off of these kinds of meds quickly, I can die. So my husband and I took the letter to Dr Bullach and he told me “not to worry”, once again.¬† He told me to make an appt. with the old pain Dr. that had seen me for the 1st 3 years following the MVA.¬† He told me he “would speak to that pain Dr and he would send him any and all information to make this work out just fine”.¬† I didn’t worry because he’d been my Dr. for 14 years and I trusted him!¬† I had been to many Dr’s over the years and nobody ever told me that I should be worried! I had surgeries and no one ever told me that I was on “mega amounts” of pain medication for my body size. I made the appointment with the pain Dr. for just after Christmas this year, 2014. I also had an appointment for my regular 3 month check up with Dr. Bullach Jr., in early December, to get my scripts and talk to him.¬† Only 2 days prior to my appointment, I received a letter in the mail. The letter was NOT from my Dr. Bullach Jr., but from the other Dr. who is the administrator of the medical center offices that I had been going to since 1986 actually!¬† The letter stated that my Dr Bullach Jr. “was leaving on Dec 12, 2014 to go to another community and be an Urgent Care Dr.”! That was it!!! I had two days notice to tell me that a Dr. that I highly depended upon was leaving soon. I trusted him to help keep me as pain free as possible! He was the Dr. who told me to “depend on him only” and that he “was the eye in the middle of my storm”! I went to see him that last day and he said he would not write my prescriptions for the Narcotic pain meds that he’d been giving me and that he’d put me on for the past 9 years! What did he expect me to do?¬† All I did during that whole entire visit, was to cry pretty much uncontrollably. I was frightened and I felt betrayed!! Once again by someone who I looked up to and trusted with my life! He just looked at me and sort of hugged me back when I hugged him “goodbye”.¬† He did assure me that he “would send all of the info that was needed to that pain Dr for my appointment after Christmas. He also assured me that the other Dr. in that practice would give me the “exact same care and prescriptions and all of my medications”.¬† He promised me that this other Dr. in the practice would take over my care and “take good care of me”.¬† the M.A. even told me that if the other Dr didn’t write the prescriptions correctly or something was wrong or different, that she would “take him out into the hallway and tell him what to write and what to do for me”.¬† I listened and tried to believe in them and in the Dr. I’d looked up to for so many years.

Well, I went to my pain Dr. appointment and found that a “bomb had been dropped on my treatment and care”. The “trusted” Dr. that I’d gone to for the last 14 years did not talk to the pain Dr….nor did he send him any records of any kind. If I had not brought all of my own records, the things that I did have, with me; the whole appointment would have been a sham. It pretty much was anyways.¬† The pain Dr. told me that I do indeed have the many pain diagnosis to be on this kind of pain medication. He told me that the Federal guidelines people are not Physicians and they are not “pain people” and therefore they do not understand pain issues or the medications. But that he had to follow the federal guidelines and that I was on much too much medication. My Dr. had put my life at risk all of these years and I was “Not the only patient this was happening to”.¬† He was pretty angry that he had to “take the fall out” from what Dr Bullach had done and then left his patients in the lurch to fend for themselves. I was left in the dark to fend for myself. The only alternative that I was given, was to go to a special Dr. in Ann Arbor, MI, who specializes in “detox”. Well, this was NOT ME! ????? I never smoked cigarettes, or pot. I never took drugs even aspirin for a headache was very rare for me. I didn’t drink and I was always a straight “A” student and really had never done anything “wrong” in my entire lifetime!

We got home and my husband first called the other Dr. in the office where Dr. Bullach, Jr. worked. HE was livid and I could hear him yelling over the phone to my husband. He was furious that he was “left with the mess that the other Dr left him with”. He was “getting rid of all of this other Dr’s patients”. He was furious for what he’d been left with, instead of being compassionate and worried for what I had been left with (and apparently others as well).¬† There was no sound of compassion and not one ounce of empathy in his voice or his word choices. He and the pain Dr. decided to “pawn me off” to a detox Dr who has a horrible reputation if you went to “ratemymds.com” or “healthgrades”¬† and others. He has 16 terrible, awful reviews and that is scary! THIS is NOT someone I would go and see…ME…who suffers from PTSD??? No way was I going to see that Dr.!!!!¬† So my husband told this to the pain Dr & to the other GP in the practice where I had been going. They told him that I “dont have a choice” and that “I might die” and that I “had to go”. They told my husband that those reviews were written by “drug seekers” and “disgruntled pain patients”. Well, I just don’t think so because I looked up several other pain Dr’s including the one I was talking with and he and many others got wonderful reviews from “disgruntled pain patients” and so called “drug seekers”.¬† Therefore this cannot be true!¬† Lastly, the “detox” Dr. they wanted to send me to has a mission statement on his website and he has many pages of all of his awards and such! He wrote a story about how he “broke his foot and walked on it for 3 months. His wife finally forced him to go to an Orthopedic Dr. That Dr told him that when he walked North, his foot went “northwest”…..????!!!! He continued into this story telling the readers that “HE did this without a pain pill”. He was saying that if he could walk on a broken foot for 3 months and feel the pain of the “weather changes” in his foot, without any pain medications, then those who are suffering with “full body RSD/CRPS, Degenerative Disc Disease, Radiculopathy, Polyneuropathies, EDS, Rheumatoid and Osteoarthritis and more; should be able to do the same and live without any pain medications.”¬† He said that most or all pain (cannot remember which word he chose so I will not quote on this one) is “perceived pain”.¬† I will end it on that note.

It has been a week already. I will not be thrown into some “place” to have some brusk Dr. that I don’t know and do not trust, take away all of my control and my pain medication at the same time; while being away from my home, my comfortable atmosphere, my loving husband and my kitty cat. I can do this myself! I am doing this myself and I’ve gone down already quite a bit but I’m doing it slowly. I am a strong woman to have already beaten an eating disorder and the abuse that I’ve suffered in my lifetime. I am not crazy or bad or stupid. I am very smart and good and loving and a kind person.¬† I don’t dwell on my pain and I do volunteer by sending kind and cheery letters to people in pain or going through terrible experiences. I do what I can to help my life be as good as it can be. I am the administrator of a support group for “invisible diseases” and we have over 850 people in our group. I know I can do this with the love of my husband and in my own home. But thank God I am strong and I am who I am because I feel terrible for the others. I found out that my old Dr., the one who left abruptly, had actually gotten into trouble for what he not only did to me but to several others. THAT is why he went to an Urgent Care in another city…and for no other reason.¬† Please….if anyone has any good and kind advice, I will take all that I can get. Lastly, I saw my Neuro-Cardiologist this week. They told me that my upper left side RSD/CRPS has worsened because I now have Lymphoedema in my left (*worse) RSD/CRPS arm. They spoke to the Vascular Dr. (luckily my appt. was in the U of T. Medical Center/Heart & Vascular area, so a Vascular Dr. just happened to be nearby); and they gave me a prescription to order a special “compression sleeve” for that arm.¬† The Dr. also informed me that my Atrial fibrillation has picked up, most likely due to the recent and pretty quick, drop in my pain meds.¬† They also gave me a referral to a center in Lansing MI to get checked out for the new diagnosis of “EDS” or “Ehler Danlos Syndrome”, which they think I have because I do have 23 of the symptoms!¬† I hope I can get an appointment in a timely manner. People with EDS do not metabolize pain medication like others do! Gee, now it’s all making more sense! But when I asked Dr. Bullach if I could possibly have EDS, he told me “no reason to get checked for it because there’s nothing they can do for it anyways”. But thats not true I’ve found out recently. Once again, I was lied to and betrayed by someone I trusted so completely.¬† I also am making an appointment at a pain clinic where a friend of mine found. It is one in which the Dr. is compassionate or so it appears. I pray that something will happen quickly because when I went to the office that Dr. Bullach left, and saw the Dr. that I was told would “give me the same care, level of care and treatment plan”, I was given almost nothing after being on the medication for 12 years! I was left to either do what he says and go to that detox doc, the mean one with the bad reputation but who gets his name and photo in “Dr of the hour magazine” or¬† to just fend for myself with no other help than my loving and kind husband. I will get through this and I will find a trusted Doctor once again…I just need one who wants a challenge and not one who just wants to put a “band aid” on me for everything and let me keep getting sicker and sicker right under his nose.

Thank you for reading. I appreciate any kind comments or responses or advice. But please, please be kind because I’ve honestly had enough abuse for one lifetime and more!

betrayindextumblr_mdluopdW0n1rw1p9to1_500