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!