Showcasing what many of us live with and deal with on a daily basis:
Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN, FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016
***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”
So here I sit, as I used to write about heartache, heartbreak and of things in the past, now I am writing to you in writhing pain as my Physician of 12 years just up and left many people in pain and left us out to allow fate to have it’s will with us. I know that I’ve written to you of late, how my Dr left and how angry and upset I’ve been. I wrote about how the pain Dr. that knew me in the past, right after my car accident in 2002, wouldn’t even see me or help me because of a “situation” and for no other reason. He didn’t want to be “involved” in a mess of being inundated with pain patients from this physician. I’m pretty sure some of them may have been unreal and faking their pain but many, like myself, have real pain issues. I think I told you also about the other Dr. who owns the practice and how he is very very angry at being “left with a mess” of pain patients on all kinds of pain medications and way too much! This would mean, including me! My old Physician left, but in the past 12 years he was like a big “teddy bear” and kind and he had kind eyes. I never thought for even a moment that he would leave me “out to dry ” like this…..or even “to die”. I don’t want to repeat myself, but I have much to say about this subject and I think maybe people can learn something from this experience. You have to stop being afraid, like I have been or had been in the past. Sometimes I am still afraid but I do my best to keep on going and not be afraid.
Back in 2002, I was in a horrible car accident. I was poo poo’d by the hospital called “St. Joe’s” here in Ann Arbor ,Michigan. I had been on disability since 1998, for PTSD and CKDII. When my disability was approved, they called my husband and told him that I “didn’t even have to go to their own Dr’s because after reading my several Dr reports, they didn’t want to put me through having to tell my story even one more time. I was approved!” I tried to get the nightmares and the fear to stop. I was trying so hard and the possibility of trying to return to my job at the U of Mich. hospitals as an Interpreter for the Deaf and as an Outpatient clerk III, felt like it just might happen one day. But then in August of 2002, a man ran a red light while fighting with his wife and I was hurt bad as his car T-boned my car and I lay unconscious on the cement afterwards. I was out for about 20-30 minutes I was told. Then taken by ambulance to the hospital where they did some Xrays and put me in the ER for many hours and left me there. One Dr. was wanting his shift to be over and he was going to send me home. I had just been screaming so loudly during Xrays, that my husband said people were leaving the waiting area so as not to hear my screams of pain. The nurse that was assigned to me that night, I wish I could thank him someday in person. He saved me. When that one Doc was going to try to just “send me home” when I couldn’t even stand or walk or move without being in horrible screaming pain, he called a trauma Dr. She got the bal rolling and they admitted me. But sadly, I still did not get the care that I should have gotten and they just let me sit in shoulder braces for 5 days until my husband finally brought me home to take me to some good Dr’s that might help me. At the hospital I was looked at differently because I only weighed 99 lbs. I was tiny and 5 feet 5 inches tall. I had been going through Anorexia off and on since I was about 17 years old. That is another whole story in and of itself. But I was still very sane and smart and not crazy in any way, shape or form. I was not on any medications, but I had been seeing a wonderful Psychologist who was helping me makes sense of some things that had happened to me while growing up and while as an adult member of my family as well.
So after 5 days of being NOT treated kindly and NOT being diagnosed properly, my husband was so appalled at the way things were happening or NOT happening, that he took me out of there. I ended up finding out that I had suffered an MTBI and several other horribly painful injuries. After 3 years at the Ann Arbor Rehab center for TBI’s, and after 10 surgeries or so, I finally know all that went wrong and I’ve had to go through many horrible Dr’s appointment experiences but I’d finally found some help. I met a great Brain Injury Dr. at St Joe’s and he helped me every step of the way. He was not on “My” side but on the side of truth and right and goodness, which was the same side that I always try to be on! I got help dealing with the short term memory loss and the difference in my personality a bit and I learned that I was now unable to read large books such as the “Harry Potter” series, but I could read Magazine articles. I am unable to still remember things that I’ve read. But when I’ve heard the same things several times, then I surely can remember them. I ended up having 2 screws put in my left shoulder because after a year of seeing several shoulder Dr’s, they all told me that I just had some “torn rotator cuffs and then frozen shoulders”. They kept on sending me to painful PT. Later, I finally did not give up and found a Dr. to listen to me and he sent me to the Cleveland clinic. Dr. John Brems, orthopedic specialist, told me that he could do a “nerve and muscle transfer from a cadaver” but he then thought it might me just alot more pain for me and it would only have fixed one thing out of many issues for me at that time. My new shoulder Dr. though, told me that I in fact “was NOT crazy” and he had to go into my shoulder in an open surgery and unattach my biceps tendon (which had grown attached to the bone wrongly for over a year because nobody would listen to me) and reattach it to the bone with two titanium screws. It helped the nerve “zings” immediately and I was so greatful to him.
I was in the hospital for pain control when I met Dr. Bullach. He was a kind man and he had a kind manner about him. I had been seeing the other Dr. in the practice since 1986, and we got along great. But my parents decided to go to him 10 years after I’d been a patient there and they started telling hem that all that I’d told him “was a lie”. He got confused and he came to me telling me that “they seemed like nice people and I seemed like a nice person and now he did not know who to believe?” I saved him the trouble and I left the practice. Only to return when I got afraid after the car accident. I came back because they knew me and had years of my records and I was in pain and afraid. Lucky for me, there was a new Dr there and I got along great with him so I switched over to Dr. Bullach for the next 12 years. He had no problem believing in me and he talked to my other Dr’s and Psychologist and I had a great team. He always told me that he was “the eye in the middle of my storm”. I believed in him and trusted him. In 2005, after trying so many medications that all made me either very ill or I was allergic to them, he started me on the Fentanyl suckers and the patches together. It was only the 2nd time that anything had worked for my pain. With the pain Dr. I had been on a medication called “Kadian” and it was extended release Morphine. It worked for 2 years and then just stopped working. The pain dr. wanted me to get an Intrathecal pain pump. I didn’t want something else put into my body, let alone stuck into my spine dripping medication into it and being “dependant forever” on another human being to fill it. I decided to just stick to meds and therefore the pain dr stopped seeing me. He turned me over to dr. Bullach to just give me pain meds and said that he “could consult with him at any time and he would help”. That never happened because Dr. Bullach put me on the above 2 meds and I stayed on them until he left the practice in December 2014.
I had gotten a letter from the insurance company stating that they “would not be paying for my pain meds after March 2015 unless a pain dr. agreed with Dr. Bullach’s treatment plan.” Well in December, Dr Bullach got into “trouble” and left the practice to go and work at an urgent care in Jackson, MI. He wrote too many prescriptions for pain meds for too many people. He over medicated too many people and I was one of them. I had no idea because before that MVA in 2002, I never even took an Aspirin for headaches. I never had pain issues before! I had no idea what was happening or what was about to happen to me. Dr. Bullach just kept on telling me to “trust him” and “not to worry”. For the past 3 years I had asked him to help me go down from the meds i was on. I was afraid of being on too much and I was worried but he just kept on telling me that he got “me off of the hospital bed in my living room” and if and when the time came, he would help me get off of the meds. Well, the time came and I had no control over it and he was nowhere to be found to help me. I was on my own and very afraid.
I went back to the pain Dr. that helped me for the 3 years following the car accident. He was good with me and believed in me and I in him. I was compliant and did what he asked and it all was good. But when I went back to ask for help after dr. Bullach left, he didn’t want anything to do with me!!! He wanted to sell me out and he saw me one time only to tell me that I had to go to be screened by another pain Dr. friend of his! Have you ever heard of a pain Dr. not feeling confident in himself and having to send someone to a “friend of his” for a consultation? It made no sense until I heard him say that He really was “inundated with many of Dr. Bullach’s pain patients and many of them were just drug seekers and he didn’t want to be any part of that”. But he knew me? I didn’t do anything wrong? I had only always done whatever was asked of me? What did I do wrong? I needed help and nobody would help me. I was very afraid and didn’t know where to go or what to do. I knew that I did NOT want to go and see his “FRIEND” …..after looking him up online, his friend was a “Dr. Malinoff” in AnnArbor who is in “detroit hourly” magazine and who gets “awards” for being such a great doc….in print!! But from what the hundreds of people wrote about him in many many reviews, I was not about to go and see him EVER! I read up on him at his website. He even states there that he broke his own foot and didn’t even go to a Dr. for 3 months. His wife finally forced him to go and he had a broken foot. He prides himself that he walked on it all of that time without even a pain pill! He had surgery and he again prided himself on “not taking anything for pain”. He even said that If you wake up in the morning and put your feet on the floor and you don’t have pain, then you should be looking for your name in the obituaries!!! I won’t quote that because he said that his father said it and he also believed in this view. But I don’t like to quote things unless I have the exact words and I’m not 100% sure of the exact wording, but this is truly what he said on his website and you can find it for yourself just by looking him up in Ann Arbor,MI.
Now, I have always been a person who never drank or took any drugs of any kind. I was NOT going to see this Dr. who I had read about and heard about from other pain patients that I admire and trust; when what I’d heard was very bad practice. He takes peoples medications away from them and puts them on Suboxone or Methadone right away. You are not even looked at as an individual and to see what might or might not work for you. This is what I’ve heard and what I read at his website as well. I am a good person who never drank or did drugs or anything bad and there was no way I was going to be sent to this place and then to possibly be put on who knows what list and never ever be helped again in my life for the real pain issues that I have. Even the first pain Dr. agreed that “I had many big pain issues” and he was very sorry but he just couldn’t take any of Dr. Bullach’s patients on.
I persevered and I finally found a pain Dr right here in my own town. He is awesome so far and I liked him very much during my first visit to him. I will see him again in August. But he did take me off of the Fentanyl Suckers. He says they are “very dangerous and I should never have been given them”. He said they are for “end of life” and for those who do not have stomachs to swallow meds. etc. He is keeping me on the patch and he gave me a different medication for my pain and I will be starting it “cold turkey” on Monday July 13th. I’m scared as I’ve gone down from my suckers from the 20 or so that Dr. Bullach had me on and now to only 3 per day. But it’s still a scary thing when I’ve been on them for almost 12 years and they are what has worked for me. So far the new meds that I’ve been trying to start taking a little bit here and there, are not working very well. I’m feeling very sweaty and sick and nauseated and my pain is not going away at all. No break from the pain like I’m used to getting with the suckers. I’m doing it but I’m scared and in only two more days, I will wake up and only have the pills and the patches. ….no more Actiq suckers and I know I can do this but it’s so hard and it’s hard already and I’ve just gone down to a couple per day, how will I do with zero?? I guess we will all see very soon. But as soon as I do this all by myself, but still with a new pain Dr. by my side and my wonderful husband, I will be sending out a letter to the one Dr. who did take over and help me until I could find a different pain Dr. to help. Also to the other 2 Dr’s who refused to help me, they will be receiving a letter as well. One will go to Dr Bullach, because he truly hurt me by leaving and not caring about me at all…and then the pain Dr. who was going to “throw me to the wolves” and didn’t care one bit either!
Here is a copy of the letter that they will be receiving: (I will post the copy of the letter next week at the end of the week after I know the letter has been received by the appropriate Physicians). So watch for that letter, I will post it probably next weekend sometime….I look forward to you reading it…thank you so much…Please pray for me and wish me luck because I’m afraid and feeling awful sweaty and sick already as I write this blog today…sending Love, Suz
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!
I never thought that this day would actually come. I’ve been praying every day, hoping every day for 9 years +, that my family would be back together again. I married at age 22, in 1984. We had 2 daughters and in 1992 became legally divorced. I won’t bother you with all of the trials and tribulations of everything that we’ve gone through, but I do wish to tell you a story of “HOPE”.
When my ex husband left in 1991, I was suddenly alone with 2 daughters, ages 3 and 5 1/2. My oldest had just started Kindergarten and the youngest just had her 3rd birthday. First I cried until I couldn’t cry another tear. Then I toughened up and bucked up and mustered up the strength and courage to do it on my own. I had felt pretty much and had actually been pretty much “alone” for the most part of those 8 years. On a Saturday night he took me out to dinner and told me he wanted a divorce. We’d met in Late August 1983 and only 7 months later, in April 1984, we got married. So, like I said, he told me that he wanted a divorce on a Saturday night. I freaked out a bit, cried a lot and by Monday, I had gone from a “stay at home mom” to a full time Interpreter for the Deaf at a school system. I thank God for going to College, especially at that point in my life.
That was the end of September and by June I knew that my “dream job” was not going to work. I needed health insurance because I found out that I truly was on my own; for the most part. My parents lived 35 or more miles away, my mother was very ill and they couldn’t babysit or help in that way. Next, I got a job at a major University hospital. I was an Outpatient clerk III and an Interpreter for the Deaf. I liked my new job and the independence it gave me. But the first few months I could not get to day care on time to pick up my daughters because the latest pick up time was 6:00 pm. I could not get there without an accident, before at least 6:20 pm because I got off at 5:30pm. I got my father to agree to sit in the car with my daughters until I got there and I was grateful for that. Though I never really understood why he couldn’t have taken them just straight across the street to our apartment and let them get their backpacks off and start homework or get a drink? But hey, I was happy with what I got. I was very thankful. I awoke at 5:10 am every work morning M-Fri, and got ready, showered etc. Then at 6:15 am, I awoke my 3 1/2 and 6 year old daughters. I cleaned them up, did their hair beautifully every day with bows and curls and such. We never “looked” poor! I fed them breakfast, listened to anything they needed to talk about and we left for Day Care at 7:15 am. The worst was in the deepest darkest of the Michigan Winters, and taking my babies out into the dark of night and the below 20 degree temps most days, or worse. My youngest used to cry every Sunday night and I hated putting her through it but I had no choice. I loved them and they needed someone responsible and loving to care for them. I didn’t want to lose their respect some day and let them think that I just sat on my rear end eating chocolates! NO! I went out and as hard as it was, I got a full time job and for awhile even went back to College to better myself.
For years I had no child support or “on” again and “off” again child support.Finally, when my father in law started paying it, then it came regularly and life became just a tad bit better when I knew that I had enough to get by for 2 weeks until my paycheck came; and with only usually $20 to spare. I got food stamps and Medicaid insurance for about 6 months, until I could get my own insurance and until I made only $80 per month too much to get food stamps. I was so proud though!! I was soooo proud when I made $80 a month too much to get the $250 worth of monthly food stamps.
So life went on…..much happened and it was hard for us. We all survived and I remarried in 1997 on Valentines day. Then to make this story more about the good than the bad, I have to tell you why I named this story about “HOPE”. In 2004, my oldest daughter became estranged from us, her family at age 18. She had to find her own way and figure some things out on her own. It broke my heart and I’m pretty sure she felt that her heart was broken too. But days turned into months and then years went by….and by…and by…..
I prayed and I hoped and every Christmas that went by, every Birthday that past and each Mother’s day that came and went, I cried and prayed and cried some more. I would listen to songs and look at photo’s that reminded me of much harder days but days in which I still had hope, in many ways. Don’t get me wrong, I love my husband of now 18 years. He is the best thing that ever happened to me & us in life, other than having my girls. He is my soul-mate and I love him and he loves me and we are a team.
Nine years ago or more, when all of that happened, I had bought a necklace that was gold and silver and has the word “HOPE” on it. I swore to wear it until my oldest daughter and I were together again. So much more happened throughout all of those years, but that is not for me to write about today. Today I am only looking forward and not backwards. Finally, today, I can take off my HOPE necklace if and when I so choose, because my prayers have been answered.
I had lunch with a very old friend in August, her name is Janet. We had our first baby girls only weeks apart and became great friends. She moved an hour and half away and then I moved and then I got divorced and then her husband passed and life kept changing for us. But through it all we stayed friends. She met me for coffee one day in August 2014. I told her that I was “losing hope of ever getting back with my oldest daughter”. I told her how much I love my daughter and always have and always will. I told her how much I wanted her in my life and how we all missed her so much. She told me to “just call her”. But I was just a bit nervous to call out of the blue like that. I mean I had sent notes, letters, gifts etc over the years but then I sort of “gave up”….not on her…but just on trying to contact her again. So she told me “why not try and text her and just tell her how you are feeling?”…I thought about it and then I did it the very next day!
I am here to tell you to NEVER give UP HOPE!! I texted my daughter and I told her that “I love her” and I told her that “I was thinking of her and hope she was doing OK?” She told me she was “tired of being pregnant and due in a couple of weeks with her 2nd child.” I had heard that she got married 5 years ago, but I had not been invited nor ever told about it until my cousin in AZ told me the day afterwards. I was heartsick and heartbroken again.
So…back to the good stuff! I texted her and she texted me back. I asked if I could have a photo of my granddaughter who was 20 months and she sent me 5 pictures! I was ecstatic!! She said that she “couldn’t choose” just one single photo…and I was glad for that! Then I asked if she might let me know when the new baby is born and also send me a photo. She did just that!! We started talking then more and more and texting and one day she invited me to come over after she’d gotten home for a few days from the hospital and having her 2nd C-section (she had 2 C sections, just like me)!
Her mother in law was there and my daughter and I hugged and we laughed and we cried. Her mother in law was so nice and funny and I was put at ease right away. This was the beginning for us again. A chance to start new. We have had over 6 weeks now of spending time together. We talk daily and we see each other almost 4 times a week if not more! Sometimes I sit in the car and let her go in and get her errands done, so she doesn’t have to take 2 babies in with her. Other times she comes over to the park near my house or to my house and we have a tea party! I got down my girls’ old small table and chairs set and cleaned them up. We had a tea party and she and Olivia and I had such a beautiful time.
I will always include her in everything because I remember my mother always took the girls into her room and left me sitting on the couch by myself after I had driven 45 minutes to their house! She always wanted to have “girl talk” with them “ALONE” and I was not invited. It hurt my feelings but I always figured that as long as my girls were happy, then I was OK too. But I really enjoyed all of us having our tea party together, even little newborn baby girl was there with us, sleeping…..but feeling the good feelings in the room.
On Monday of this week, my oldest daughter and I drove an hour to her younger sisters house, my youngest daughter and her husband live about an hour from here. My oldest daughter and I only live about 4 blocks away from each other now! I love it so much! So anyways, my youngest daughters, 26th birthday is next week, so we took a picnic lunch and went to their house and to the park and went for a little walk.. This was the first time we’d been together in almost a decade! It is a wonderful feeling!!! I almost forgot to tell you that a week or two after we started seeing each other, my husband and my oldest daughter saw one another; they hugged and he got teary eyed.
Life is so much better when you can let go of the past and all of the hurts, big and small. If you can let it all go and start over and refreshed with a new found way of life and have no need for hurt or revenge or anything but kindness and love and a sense of family…that’s when life will turn around! When I could finally stop and think and let go of all of the old “junk”, that is when my “HOPE” came true and my life is so much more fulfilled now. Of course there are times in life when one might have been damaged physically, verbally, emotionally and worse. Unfortunately, sometimes in those cases, it’s not always just a matter of moving on. Sometimes just forgiving in your heart, can lessen the load and it can help you move on just to have forgiveness in your own heart. We cannot force anyone else to think, feel or act in any certain ways. We can’t force anyone to feel how we want them to feel.
I am in chronic pain from RSD/CRPS , RA, DDD, SSS, OA, Dysautonomia/POTS/NCS and many other health issues. I was in a MVA in 2002 and have suffered through 12 surgeries and alot of pain. I have had a heart attack, a CVA (stroke) and I’ve gone to many Dr’s visits. I am through it and sort of on the other side now; and couldn’t be happier, unless of course the pain was gone. But it’s a lot easier to bear when you feel loved and you are being more loving yourself. I am so happy that my family is together again. I will never again hold onto anything bad in my mind, heart or soul. I give it up to God and I am going to enjoy life as best that I can. I will have my days in pain when I cannot do anything, but I will have the love of my daughters and granddaughters. I love them, my husband and their husbands Thank you for reading my story and please…NEVER give up HOPE…..it does come, but in “his” time, not in ours. We don’t know why?? But God does know what he wanted me or all of us to learn first. Thank you again… also thanks for allowing me the pleasure of posting a few photos from our day at my youngest daughters house and a few others too.
One more thing before I sign off for today. I wanted to apologize for being away from my writing for a whole month. I try to write weekly or bi-weekly. As you can see from my story above and the photo’s, I was just very busy this month; allowing things to happen naturally and waiting for the best time to tell you this wonderful news!