Ok, now I’m really starting to “get it” into my head about this “war on pain meds” issue. My General Practitioner or my “GP” left abruptly, last December 2014. He had been investigated for prescribing waaay too many pain meds to the good, the bad, the pained and the seekers! It’s Dr’s like, Dr. Peter Bullach, Jr. MD, who “hurt” all of us! Now, because of him and others like him, I’m scrambling and trying to find someone to help me with my own pain “HELL”. My body in a Hell of its own, due to Chronic Intractable pain. I have enough pain issues to be on the Opiod medications. I suffered first from a MVA in 2002 and following that accident I had several, or up to approximately 10 surgeries! I have screws in my shoulder, my jaw and have had 2 pacemakers. The first one wore a hole right through my pectoral muscle and in 2013, when the Neuro-Cardiologist, went in during surgery to replace it, he found a mess! He had to call other Dr’s and they researched my RSD/CRPS first. They even did an internal wash inside of my surgical area. They used a medication called “Bipvucaine” to try and head off a spread of the pain disease called “RSD/CRPS”; which I now have “systemic” or in my whole body. My whole pectoral muscle had to be repaired and remade by a plastic surgeon and others. My heart literally stopped, the Dr. told my husband afterwards; when they took out my old pacemaker and before they replaced the new one. I had 2 torn rotator cuffs, with then two sides of Adhesive Capsulitis! I had 8 years of PT/OT and had torn Meniscus, a parrot beak tear that kept getting stuck in the joint! Because I have a pacemaker, I was not allowed to have MRI’s and instead I was tortured! Yes, the Orthopedic surgeon would not do any surgeries without “seeing” inside first. I guess a CT scan isn’t good enough? So I had to endure the the old Barbaric & horrific torture of “CT Arthrograms” and I had to have “FOUR/4” of them!! Yes, I said FOUR of them! I had one in each shoulder and one in each knee. In fact, the day I had the first knee CT Arthrogram done, the technician had given me several numbing shots of lidocaine and then I said “owwww it really is still hurting, I can feel it”…so he said to me “Well….do you want to come back a different day?” What the hell??? Really?? After poking my sore….no, very extremely injured and sore knees, did he really think I was going to “come another day again”?? OMGosh, I was so furious and I cried so many tears that day, most of them on the inside. It was barbaric and then I was totally believed because they could “SEE” my pain. Then the surgeries started happening. On a side note, I suffered a MTBI and had to go to “brain injury rehab” in Ann Arbor, MI for 3 years following that car accident as well! The TBI is a whole story in and of itself for another day. Today we are talking about real, true pain that nobody else can feel except for those who have it! So to finish off my introduction here, I want to also let you know that during the first year following the car accident I saw about 10 different shoulder surgeons. ALLLLL of them were pretty rude and thought I just had “too much wrong with me to be real”. They either “blew me off” or offered me MORE PT or like this one Dr from Beaumont Hospital said….I’ll never forget his name, either…”Dr. Roland Brandt”(orthopedic surgeon)….he said to me “What part of “I CANNOT FIX YOUR SHOULDER!!!!!” Dont you understand??? Is is YOUR BRAIN INJURY?” I was mortified and “ran” as well as I could run wearing 2 AFO’s on my legs with a walker to walk with assistance! My driver from the transportation company, who was hired by auto ins. to take me to all of my medical appointments, felt just awful! He couldn’t believe when I told him why I was crying and what had happened. The girls in Dr Brandt’s office had looks on their faces as though they couldn’t believe what they’d just heard either!! What a bad man!! What happened to “DO NO HARM”???
Life went on like that, until I saw Dr. Jeff Michaelson, MD, an orthopedic shoulder surgeon at Providence Hospital. He took one “poke” at my left shoulder and knew exactly what was wrong! He sent me to the Cleveland clinic to be seen by Dr. John Brems in Ortho there. He was so kind and he felt bad for all of my injuries. He knew I was in great pain. He offered to do a “nerve, muscle cadaver transfer” surgery on my right long thoracic nerve/winged scapula injury. He later said that I had “so many pain injuries/issues, that it’s not worth it to put me through more pain and recovery of a big surgery like that, when it would only fix one thing”! He then agreed with Dr. Michaelson about my left shoulder. He said that I was correct and “something was definitely wrong!” My left Biceps tendon had ruptured during the car accident and after a year of seeing shoulder Dr after Shoulder Dr. with nobody willing to help me, or even try; I finally was validated! Dr. Michaelson did a surgery where he had to detach my biceps tendon, because it had grown onto the bone wrong for a whole year! He then had to reattach it with 2 titanium permanent screws! Guess what? He fixed one problem! No more “nerve zings” down my left arm! No more screams when I reach my arm out for something! He was awesome and sometimes it takes 10 Dr’s or 20 before you find someone that treats you with respect and who will help you! Don’t give up!
I had many surgeries and I went to the pain Dr. for Epidural injections, nerve blocks, trigger point injections and I did everything I was told and asked to do. I was told that I did not have “an addictive personality”. I was tested Psychologically by the shrinks at the pain Dr’s own office. I went through “Biofeedback” even though I sort of new that was not going to be a strong point for me, with my personality. I’m not a very calm person really. It’s very hard for me as I suffer from PTSD and actually got put on SSDI in 1998 for that. I have a great Psychologist and he just says that he is surprised that I’m “not dead or crazy with all I’ve been through”. The SSDI office also spoke to him and my husband telling them that I am “the worst case of childhood abuse and trauma they’d seen in the past 36 years!” I was approved first try! Things got worse though instead of better. The pain Dr. offered me an Intrathecal pain pump in 2005 after 3 yrs of trying different meds (some that worked for 2 yrs!), doing all of his treatments, shots, blocks etc. Auto insurance did not want to pay for a lifetime of a pain pump and they told me and the Dr. “NO”! I was willing to do the “trials”. My auto case was through “catastrophic claims” but still they wanted me to go through the agony of 6 more IME’s (independant medical exams by “hack” guys who call themselves “Dr’s” but I take that very lightly! They were horrible and bad people! Not a one was a good person and I had to fight for everything and I won every time! I fought for my auto case and never had to go to court and I won! So why did they give me so much trouble?? They knew I was a “LIFER” and going to cost them too much money. I never even took Aspirin when I had a headache prior to this accident!! In the end, the pain Dr. turned me over to my G.P. and told me “He will take care of your pain meds because I am looked at through a microscope!” …He told me that Dr. Bullach would be prescribing my pain meds and if he had any concerns or questions, he could consult with the pain Dr. and he’d help.
Little did I know they never spoke about me again. My GP just kept on prescribing pain meds which all made me ill or I was allergic until I found the Fentanyl patch and the Losenges. I think I told you previously in another post that I’d been on a hospital bed in my living room for awhile. Finally, we found that the patches and the Break-Thru pain “suckers” worked together well. Then I had my “rescue” meds for severe pain to keep me from going to the ER. I rarely take these as I have to and have had to make sure that something would still work for severe pain, or acute pain following an injury again or a surgery. I’ve done very well in that the “rescue” meds get thrown away, down the toilet, when I don’t finish them in over a year! I had gotten the script for those only annually and was very careful to only take them in emergent situations. I just read an article last night (wish I could find it again, sorry…if I do before completing this writing; I will share it with you) that was about how the best way to handle medications with the kind of horrible chronic pain that I have is exactly the way I was taking them. But I’ve been on these meds since 2005. Prior to that time, as I stated above, I had tried different methods to help diminish the pain. I had gone through with different shots, treatments,nerve blocks etc. from the pain Dr. between 2002-2005. I had a mild heart attack in May 2005 and then I acquired Atrial Fibrillation. A few months later I was prescribed and then started wearing the Fentanyl pain patch, which was something that finally helped my pain. Along with the transdermal patch, I was given the losenges for BT pain. The dose was raised every so often and since 2010 I’d been on the same medication amount for the rest of the years up until December 2014, when my GP left abruptly.
I was told by him personally, that he was leaving to “spend more time with his kids”. I’m pretty sure that most Dr’s know the work and time involved and he was already a Dr. when he married and had his 2 sons. He told me during my last appointment with him, that it would be my final time seeing him and he was going to an Urgent care. Thus meaning that none of his patients could “follow him”. He told me that his partner would take over my care exactly the same as he’d been doing it. He told me that “nothing would change” and “it’d be OK”. He also told me he would send my records and a nice long letter to the pain Dr. and he said he would “personally call the pain Dr.”. Neither of which he did for me in the end! But I’ve already spoken of the betrayal I felt and the fear and the unknown’s that were keeping me up even more at night.
I went to the pain Dr. appointment in January 2015, blindly being trusting & naive. He saw me one time and smiled and lied to my face. He blatantly told me that I “had more than enough terribly painful diagnosis’ to be on this kind of medication regimen. He told my husband and I all about what “really” happened to Dr. Bullach. He told us about how he had “gotten in trouble”. He told us about how Dr. Bullach had been “overmedicating” many patients and including me! Like I’ve said before; I am a “lay” person and never even took Aspirin for headaches or anything before this happened to me. That pain Dr. said that he’d see me but he wanted me to go and see a “buddy” of his also another pain Dr.! But why? No one’s ever heard of a pain Dr. having his patients “screened” by another. Besides, he’d known me for 3 years in the past. It’d been about 10 years or so, therefore technically I was considered a “new” patient. He had my records from those past 3 years of treating with him! I was compliant and a good patient. I did everything he asked of me. His Psychologist and Psychiatrist told him in a letter (*which I have in my possession), that I “do not have an addictive personality”. Also, I am a very “motivated” person when I get my mind set on something, I do it! So, then the 2nd appointment that I tried to go to for this pain Dr. I went to check in and the girl said to me “the Dr. wont see you”. He didn’t want any of Dr Bullach’s “throwbacks”! Nobody wanted us! Not him and not Dr Bullach’s ex partner’s either! Most of Dr Bullach’s pain patients, “got the boot”! I have heard stories that many were given their pain meds and told “to leave and not ever come back”! That’s so scary and so sad. I became afraid when I found out my Dr of 12 years was leaving and I started trying to go down slowly, ever so slowly off of my meds. I had asked him for the last 3 years to help me go down off of some of the meds because my husband and I felt that maybe I was on too much. We felt that way because although it’s true that I have a TBI and a balance disorder, I fell quite often. I fell 6 times or more in 2014 and suffered 6 concussions. I just was feeling a weird all over kind of pain and I couldn’t ever sleep, which was worsening. I wanted to at least try to go down. He kept telling me that I “had a life now” and that I “wasn’t on the hospital bed anymore. I listened to him and then I’d mention it again. We both were like broken records. He did say that when the time came and he decided to take me down off of them, that he’d “put me into the ICU and watch me and sedate me and I wouldn’t know or feel any discomfort and it’d be over quickly”. He just repeated to me to “let him worry about it”! So finally, I stopped bothering him about it and just trusted him.
Well, the time has come and I’ve had to do it for myself, because his partner didn’t and doesn’t really want me as his patient. He doesn’t want any of Dr Bullach’s “pain patients,(*also called ” drug seekers” etc”). He has been helping me by getting me lower and lower dosages. I am very grateful for his help. He agreed to see me only because I’d gone down about 50% from the 1st to the 2nd time I saw him. Now I am down by 85%. He said I am “motivated”, otherwise he would not be seeing me for this either. I went down on my own. I’ve been feeling pretty vulnerable, afraid and alone.
Remember that I had had a heart attack, Atrial fibrillation and many other issues? Well, now I must go to see a GP, who doesn’t really like me nor want me as his patient. “It’s too much work”, he’s been saying for these past 5 months. He confessed that he “doesn’t know much about RSD/CRPS” and that I need to find a pain Dr. so he can “hang his hat” on that Dr’ instead of having the pain meds go through him.
He’s afraid because the government has made all of the Dr’s afraid! So now, just as with Gun control, the bad guys can still get their guns &/or drugs but the good guys who are true pain patients, are being put through horrible treatment and being made to feel like we are “criminals” or something! He says that he “hates the paperwork” and that he “hates having to do this for many many patients throughout his day now. He complains at every 3 week visit about how “the other Dr. left him with a mess to clean up”! He’s very very angry. He tells my husband and me that He is “awake and at work until 11:30 pm and then back at the hospital to do “the old Dr’s patient rounds” at 3:00 am. He tells us how he has over 300 phone calls per night to make. He had me in tears feeling sorry for him! He reiterates these things at each and every appointment. I suggested that he get or hire a nurse to make phone calls or someone to help him. Then he explained that “HE NEEDS THE MONEY”!!! He complained about the new part time Dr. that he hired and how she “makes so many mistakes daily and cannot see enough patients”. He says “she is costing him $1,000 per day in pay and then $500 in problems come out of it!” Now remember, this is supposed to be my appointment that is costing $120.00 per visit (luckily, I have a lesser co-pay but that is the cost). I walk out crying every time I see him. But I feel “married” to these pain meds because nothing else has ever worked for very long. (**I’m either allergic or have horrible reactions, along with the fact that I suffer from “Long QT syndrome” which is another story for another day. But in short, it is a heart issue that makes me unable to take many different medications or I could suffer “sudden cardiac death”).
I had to reduce the amount of my pain meds by 80% to feel the real results. I’m at the approved FDA level now and it’s been several weeks and it still feels a little bit low. For a short time when I was just taking a wee bit more of the BT meds, I was able to be a little more active.. I hate this! I hate it so much! I know that I can die if I just stop taking them or if a Dr. decides to stop prescribing them to me all at once. I’ve seen it written in little articles and blurbs online etc. where Physicians have actually said “I will just stop prescribing them and the patient just goes through withdrawals. It’s not that bad.” Well, from what I’ve heard it’s very very dangerous (aside from being torturous) and even more dangerous for me, being that I’ve already suffered a CVA in ’06 and a heart attack in ’05! So I feel “stuck”! I’ve had medical professionals talk down to me, treat me with disdain and for what reason? I’ve done nothing to hurt anyone? As far as the GP goes, the one who took over when my GP of the past 12 years just up and left, …well, I did not “leave him with the mess” or anything of a sort! I’m an innocent pain patient in need of some TLC and some medical help probably forever. Since my old Doc left, I’ve not had anything checked. The nurse sometimes will take my BP but when the Doc comes in and for example, my last appointment it was 146/95….he said nothing! He never asks me how I am feeling. He never checks anything, or even listens to my heart or lungs! He doesn’t look in my mouth, feel my neck or look in my eyes or ears! I’ve not had any Dr. check anything actually in a long time! I don’t think anything has been checked since my heart surgery in 2013. He gets out a script pad, writes the script for a whole 23 days of the medication and we do it all over again in 3 weeks. It’s torturous and horrible and I feel so helpless! I’m a lay person and even as such, I would think that at each appointment, with my health history, I should be at least looked at, “listened to” and possibly just feel cared about a little bit even??
Ok, so everything isn’t about me. I’ve learned that already and I learned it early on in life to say the least. This is not my problem! This is not even just my story! This is the problem and the story for each and every pain patient out there right now in the USA; since things have been turned upside down and inside out with this “war on prescription pain meds”. It feels like they decided to choose one of the most vulnerable groups of people; people who cry before putting their feet on the ground as they get up each and every day, like I do! WE are strong people YES! But we are vulnerable and in such great pain and we need your help. Everyone needs to contact their government officials and ask for this to be changed. What happened to the Hippocratic Oath that says Dr’s should first “Do No Harm”?? They are doing harm! The worst thing that is true about it is that the bad people still can get what they need. They don’t care and they get it however they get it and I don’t even want to know about it. The point is that the bad guys always get it!!! The good guys who are hurting and who don’t do anything wrong and who have not ever asked for this lot in their lives….we don’t get what we need! I am a good person! I was a single mom and worked full time and I went to College! I had and have 2 daughters and when they were young I did everything for them and I was available for them but I still worked and took care of them. I worked hard and I got hurt through no fault of my own….not even from my own actions. Why do the bad guys always win? Somewhere it’s just not fair!
In the past decades, I thought pain care was getting better. The Doctors seemed to be listening to us and trying to help us. What has happened is that in the past, people were given “power” when they could feel well and do things for themselves. They could work and put “bread” on the table for their families. What is happening today is that “THEY” are taking all the power away from us. As we are losing access to pain meds that work for long term chronic pain diseases, then more people go on disability and suicides increase! Don’t “THEY” know this? I know that I wanted to write that “our” freedoms are being taken away. But Its more personal than that! I feel that my own freedoms are being taken away because now I can only do something semi active for about one hour to possibly two at best and then I’m at home in my “lazy boy” chair until I try to go to bed at about 11:00 pm…but then I lay awake and go back to watching TV or writing or going on my computer because of the pain, I am unable to sleep! Hey, I cannot even take something to help the pain at night because I had to use it during the day so that I could be a real grandma, a fun grandma and not a grandma that sits and cries because she is unable to participate in any aspect of normal daily life due to pain, constant gnawing, deep aching, burning pain 24/7/365 !!
There are over 160 million patients in the USA being treated for some form of chronic pain. That could be a lot of voices and help if only everyone would try to help.(paincareislegal.com /this information is from an online article by them and anything that is ** from their words and not my own)…
**Here are some ways that you can really make a difference and help:
1. Call your Senator. Get the word out to law makers to help reign in the DEA to help our issue attract public notice (Paincareislegal.com)..
.2. File an ADA Complaint. If you are disabled and a Pharmacy refuses to fill your prescription it could be an ADA violation.
It just appears that the DEA has become overzealous in their fight against Narcotic pain relievers and they are harming the pain patients! We are the exact persons that these medications were designed to help! Oh My Gosh, they maintain that they are only trying to prevent diversion of the meds to “drug dealers and drug abusers and that any issues are the fault of the pharmacies and doctors”. This is absolutely untrue! What’s happening is this:
**Each day it gets harder to fill legitimate prescriptions for law abiding pain patients
**Every day there are new insurance rules, new pharmacy rules and new doctor rules supposedly aimed at preventing divergence that make it harder on the patient.
**Each day more pharmacies, and doctors are being forced out of business for minor infractions and rule technicalities by the DEA.
**Every day the DEA is pushing us towards feeling like or becoming criminals instead of the other way around! (*this info is from PAINCAREISLEGAL.com)
You can also help by writing a letter to the DEA (this letter is a form letter but you may use it and add your name. It is from the “Paincareislegal.com website): Dear DEA, Please end this war on pain patients. Patients with a legitimate need for pain medication are unable to fill their prescription due to the overwhelming rules and pressure you, the DEA, are placing upon pharmacists, doctors and manufacturers.
Please visit paincareislegal.com to find out what more you can do to resolve this health care crisis.
I found a little more information from “Paincareislegal.com” and here is what they are saying (I also double checked up on them and they are legitimate, no joke. Just real genuine fear and care for what is happening to us.) …Here are a few more things that WE can do as patients:
1. Sign the “Paincareislegal.com” White house petition. If they get 100,000 signatures the white house will personally address this very important issue.
2. Call your Senator: Getting the word out to law makers to help reign in the DEA to help our issue attract public notice. I strongly recommend you call instead of sending email. But if you are not comfortable making a call, you will find email forms at these links as well.
3. File an ADA Complaint. If you are disabled and a pharmacy refuses to fill your presription it could be an ADA violation.To file a complaint with the ADA you can go to the PAINCAREISLEGAL.com website and tehy have all of the #’s and emails available.
4. File a State Boards of Pharmacy Complaint. The permit holder/store owner, the pharmacist in charge, the pharmacist who refuses to fill a prescription, and the wholesaler are all licensed by their state’s Board of Pharmacy. A complaint for unprofessional conduct can be filed against each with the appropriate Board of Pharmacy for refusing to fill your valid prescription.
5. Call or write your major drug wholesaler. Many of the current shortages are caused by wholesalers rationing the amounts a pharmacy can purchase. Call and let them know how you are being affected by their rationing.
A. McKesson Corporate Headquarters: One Post Street San Francisco, CA 94104 and ph#: 415-983-8300
B. Cardinal Health: 7000 Cardinal Place, Dublin, OH 43017, ph# 614-757-5000
C. AmerisourceBergen Corp: P.O. Box 959, Valley Forge, PA 19482, PH# 610-727-7000
I am not an employee or any spokesperson for the Paincareislegal.com company or website or anything like that. I just found it and read it and wanted to share a bit of their info with you. You can decide for yourself what you think ,feel and what you do or do not want to do.
It just upsets me that the AMA is on the side of the pain patient, it seems. But the DEA talks about how they are just trying to get these specific meds out of the wrong hands, such as drug dealers and drug abusers. They just blame the pharmacies and the doctors. I do not feel that this is true. Every day since this whole “war” started, it gets harder and harder for me to get my prescriptions filled. Many other patients with the same horrible chronic nerve pain and other pain, are having the same issues. I keep seeing new rules and new insurance rules, Dr’s and pharmacy’s rules. The rules are supposedly to keep drugs out of the hands of the drug abusers and dealers but all that is happening is that we, who’s bodies are weak and feeling the horrible pain, are being abused by this system. The “bad guys” find ways to get what they need and what they want. But we suffer because we follow the rules and laws and want to be good people.
There are so many websites and news articles that talk about these things. Please educate yourself, make yourself heard. Find these sites and read them and get your voice heard! Make a Facebook group or page to help you round up sympathizers, people who feel the same as we do. Suggest meetings and support groups and please help us “fix” what has recently started to kill the world of those of us in horrible, terrible chronic pain that is forever. We want to have at least some kind of a semblance of life. I want to hold my grandchildren for more than just a few moments without being in pain all day. Please help where you can! Get your voice heard as well! Thanks!
Remember the Hippocratic Oath: “First Do No Harm”!!