Down The Rabbit hole


alice1alice3

I want to inform the pain community about my situation because this is happening to many chronic pain patients. I’ve been a voice in the pain community and now I too, am going “down the rabbit hole”! Before I become possibly incapacitated; I want you to know what is happening. For those like Kolodny, who believe that we should “get beyond the pill bottle”; I say, unless or until you are in my shoes and live with my experiences, stop preaching silly things like “pain acceptance”, will help. It cannot help all of my pain conditions combined. Stop acting like you are better, mightier or stronger because you might feel better from “grounding” (which is in essence, touching the earth with your feet, being “one with the ground/nature”, to make your pain lessen or disappear). The bottom of my feet are covered with open sores due to the stage of CRPS that I live with. This has become insane, while there are individual cases in where opioids are the preferred treatment and they do continue to reduce our pain.

*A bit of history if you want it: I won’t start at the very beginning because that would be much too long. I will tell you that I’ve been on SSDI since 1999 and initially for PTSD (*they said that I was the “worst case of childhood trauma/abuse they’d seen in 36 years) and kidney failure. Then I was hit by a car that ran through a red light. One minute my husband & I were sipping lemonade at an art fair.  The next minute, (as we travelled through a green light to have dinner afterwards) he was really bruised & shaken and I was unconscious & strapped to a back board, on route to the hospital. That experience is a story for another day. The entire auto insurance bullying and fear mongering was another traumatic debacle. These experiences have continued, one after another; which brings me to today and this article. 

After our accident in 2002 and upon being discharged from the hospital; I was sent to doctor after doctor. I was also sent to TBI rehabilitation, PT/OT and also to Tri-County pain clinic in MI. I was totally new at all of this & it was my first experience with this type of physical pain. Although, I have had 2 C-sections and I’ve lived through childhood, ex-spousal & other abuse throughout my entire life. At the pain clinic, I received various epidural nerve blocks, trigger point, cortisone and other injections. I also saw a Pain Psychologist, did Biofeedback and did many other types of therapies. The Pain Psychologist wrote in his report, by the way, that I “do not fit the profile for an addictive personality.” He attached me to an EMG type of machine where he can “see” your pain spiking via a red line going upward. Mine went off the charts. This was prior to my diagnosis’ of: systemic CRPS, EDS-4/vascular (aka Polyneuropathy in Collagen Vascular Disease), R.A., Dysatuonomia/POTs, Gastroparesis, S.I.B.O., Chiari and more. At that time though, I was diagnosed after the auto accident with: many physical injuries and a TBI. I went through 8 surgeries, 2 screws in my left shoulder, metal in my jaw, 2 AFO’s, prisms in my glasses, 2 hearing aids, a dual chamber pacemaker and a hospital bed in my home. I have a walker, loft-strand crutches, wheelchair, motorized scooter, leg braces and also knee, neck, hand and shoulder type of braces.

After going through all of the “hoops” at the pain clinic, I was found not to be a candidate for an SCS (spinal cord stimulator) nor a pain pump (intrathecal). I was diagnosed with CVID or “Combined Immune Deficiency” disease. They informed me that I would be sent back to my primary dr. because they could not give me the medication that I needed. In 2005, they were already saying that they could not prescribe pain medications (which they felt I needed) because they had to “stay under the radar of the DEA”. I went back to my PCP and for the next 10 years he prescribed pain medications.  Until one day in December of 2014, I arrived at my PCP’s office and was told that it was his last day working there. I received no other information and I was terrified because I did not know where to go or what to do. Dr. Bullach MD; promised me that he would personally make a call to my former pain clinic and Dr. Dobritt, my former pain physician. He also promised me that my treatment would remain the same under his partner. I returned the next month to see his partner and was condescended to, teased, put down, and told that “all of the other dr’s patients were “drug addicts”, “drug seekers” and unworthy people seeking pain medications. He promised to see me for a couple of months because he had known me “to be a good person” since my children were small. But over the next 6 months I had to put up with derogatory remarks.

Dr Bullach never did call Dr Dobritt, nor did he send any of my updated records. I found that out when I went to see him myself again. I had been a model patient; and the way I was treated when I went back to see him was horrible. He would not take me back as his patient! He told me that’ “he couldn’t see me because I was part of “Dr Bullach’s mess”! I had no idea what he was talking about!

I sought out a pain physician and found one near my home. He told me that if I could take myself off of the medication that had been prescribed to me since 2005, that he would “accept me as his patient”.  I was very ill for about 11 days and for up to 6 months, I was not feeling well aside from the pain issues. But I got through it and would not ever want my worst enemy to go through that experience. I did it with my loving husband by my side because I was not addicted to it. My mind did not care at all, but my body was dependent. When that ordeal was over, I saw my current pain dr; the one I still see today. Things had been going well and I have had some semblance of a life. He had told me that I was a “complicated patient” and that I did not have to worry about my medication being stopped.

For several days prior to these appointments, I became very apprehensive, nervous and had many of the PTSD symptoms recurring monthly. Then his attitude towards me changed from a mutual respect to him being the “Wizard with a magic wand” and Me being a peasant “needing his magic”. Thats the only metaphor I can come up with. It was bazaar. I had a routine urine drug screen test in April 2018 and he knew before I left his office that something was not “right” with it, but he failed to inform me prior to leaving. At my next appointment he informed me that I had had a positive urine test and so he sent it into a lab for more testing. It came back as a “false positive” because of the migraine medication that HE KNEW WAS PRESCRIBED to me for many years. I take very little, but he knew it was in my records; he knows that I take it.  In the end, we got stuck with a $265.00 bill for testing that I did not agree to pay for. We got stuck with this large bill for something that I did not do and would never have done. It was his mistake, not mine that he forgot the medications that I am taking and that it can show up as something else, as he explained later.

He has had an “edge” to his treatment of me since that date. I am literally ill prior to each monthly appointment. Nothing changes in 30 days anyways? Why in the world do we need to go so often? This is ridiculous.  Just as a person with diplopia or myopia needs glasses; just as a diabetic needs insulin and a depressed person needs anti-depressants; I am a chronic intractable pain patient and I need pain medications.  I’ve never done anything wrong as far as I always pick up my meds on time, I’m never late for my appointments and I’ve never been a “no-show”. But I showed up on July 9th, 2018; and was suddenly without explanation, cut down to 75% of my LA/ER pain medication. He was going to stop it abruptly that day, but I did not get hysterical. I reasoned with him, adult to adult. I reminded him of my prior heart attack, the CVA (stroke) and my complicated medical history with multiple co-morbidities. He agreed reluctantly to taper me a bit. He informed me that he was doing this to get me “psychologically ready” and that next month I would get zero.  I’m not “Psychologically addicted” so that made no sense at all, but I went with it for my own comfort and safety.  He went on to tell me that suddenly the patch is  now “only for cancer patients”, which he does not treat. He also told me that I was “not heavy enough” for the patch and “I was probably only really getting 30% of the medication”. I did not say a word as I was prescribed down from 100 mcg per hour, every 48 hours (due to hyper metabolizing), to 75 mcg every 72 hours. So not only 25% less medication, but now being stretched out a full 24 hours longer each patch. The first few days were difficult as I had a few withdrawal symptoms. But the rest of the month, I’ve had increased pain, exacerbation of my CRPS, and fatigue. Also, every 3rd day I was in bed, very ill. We all know that for especially those of us who hyper-metabolize (due to the types of pain illnesses that we have), the patch never works on the 3rd day!

I have a loving, supportive husband and my support “team” online which consists of a few people who have been there for me throughout this ordeal. I had websites, stories and ideas sent, all in an effort to help me reason with my pain dr. On 8-10-18, I showed up well prepared.  I had with me, the 2013 FDA’s response to Andrew Kolodny, when he wanted Fentanyl labelling changed for non-cancer pain. They told him this, in their 2013 letter (Docket No. FDA-2012-P-0818):  “It is FDA’s view that a patient without cancer, like a patient with cancer, may suffer from chronic pain, and PROP has not provided scientific support for why labeling should recommend different treatment for such patients.  In addition, FDA knows of no physiological or pharmacological basis upon which to differentiate the treatment of chronic pain in a cancer setting or patient from the treatment of chronic pain in the absence of cancer, and comments to the Petition docket reflect similar concerns.  FDA therefore declines to make a distinction between cancer and non-cancer chronic pain in opioid labeling”. My dr responded that “this was not about Fentanyl” and that I am educated and should be able to find out about this?

Next, I brought to his attention, a letter that I received a copy of, from a good friend of mine on LinkedIn. He had written to the CDC and asked about the horrific state of affairs within the chronic pain community. We covered his name and I showed this to my dr as well. This letter, which is directly from the CDC and dated 4-8-18, states these things:

  • chronic pain patients deserve safe and effective pain management
  • physicians should continue to use their clinical judgment and base their treatment on what they know about their patients. That includes the use of opioids if they are determined to be the best course of treatment. The Guideline does not support involuntary tapering.
  • Obtaining patient buy-in before tapering is critical to successful dose reduction.
  • The Guideline is not a rule, regulation , or law.
  • The Guideline is not intended to deny access to opioid pain medication as an option for. pain management.
  • The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain.
  • The Guidelines are not intended to take away physician discretion and decision-making.
  • Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy.

In the end, none of the information that I presented, made any difference to my pain dr.. He just kept repeating “the guidelines, the guidelines, the guidelines”. He told me that in all reality, I was not worth saving, because if I look at his waiting room, he has all of those other people to serve, who also live with pain. If he helps me, he risks losing his practice and then he would not be able to help all of them. He informed me that “everyone is looking at him the same way” and they are also “pleading with him” for their medications.  I told him that he’s told me that I am “different” and that I am a “very complicated case with multiple co-morbidities”.  I told him that I researched Michigan Law and that there are no changes in the care or plans for chronic pain, only acute pain. None of this mattered because he just looked at me, after I showed him the letter from my G.I. dr.. A letter written by him on my behalf, states that “Suzanne has been stable while she received the fentanyl patch”. It goes on to say that I have “RSD and severe Gastroparesis and this could “exacerbate the illness of a patient who was difficult to stabilize” due to Q-T prolongation, her allergies and intolerance for oral medications”. He said that “he strongly recommends that my pain management not be altered unless there is a strong medical reason.”

My pain dr looked at me and said “This is bullshit! His license is not any better than mine! If he wants you to have the fentanyl patch then let him prescribe it for you. You’re also welcome to find another dr and get a 2nd opinion. I won’t be upset if you do that, although Im not kicking you out or anything.” He repeated that “the CDC guidelines are specific for fentanyl” and there was no way in hell I was ever getting that from him ever again, an neither is anyone else; no matter what! He pretty much told me if there was an exception, I would be it, but there are no exceptions. He repeated to me that I am educated, and have access to the internet. If I do my research, I will know that what he’s saying is true. I have done a ton of research and I know that what he’s saying is not true. He is violating his Hippocratic oath “to do no harm”. Many other physicians are also doing this instead of defending the fragile people who need them during this opioid hysteria

The Cardiac Catheterization From Hell!


part of the floral arrangement that was delivered to my home afterwards from my dear friend and “sissy”

the note on the floral arrangement…this meant everything to me!

Hello Luvs,

Awhile back I’d had a Cardiac Cathetarization done; or “Cardiac Cath”. It was August 30, 2011.  I had visited my Cardiologist, the one who’d known me since 1991. He told me that he saw some suspicious “stuff” in my stress test from the week prior and he wanted me to have a Cath done. I was really scared because he told me that HE wouldn’t be doing the procedure, but his ‘new young Dr friend” that he just hired to work with him, was going to do it. I told him how I’m a ver difficult and/or “special” case with the chronic pain, RSD/CRPS and all of the issues I have. Also, my cholesterol was always at 170 and never went up but this time when he did the test, it was about 204 or something like that? Frankly, I was not totally “freaked out ” by 204!! But for some reason he was??

Well let me tell you about my procedure and I’ll try and post a little video if possible so you can get a glimpse of how the procedure is supposed to go. First of all, when I was in the pre-op room, on a gurney; the nurses were GOOGLING “RSD” and “CRPS”. They had no idea what it is! Then Dr. Trevax (sp?) came in and HE also had no idea what that “painful nerve disease” is that I was trying to talk to him about prior to my procedure!! He started to GOOGLE CRPS/RSD too!! Can you even believe this in the Century that we are in? He was a very young looking “new” Dr so he should’ve known about it as it should’ve been fresh from Medical School! He giggled and talked with me as if nothing was going on and I was there for a “good time” or something. I tried to explain to him /them that I was on quite a bit of Fentanyl for my chronic pain/nerve pain issues and my CRPS, along with the other pain issues. I now know for a fact that it went into one ear and out of the other!

My procedure was a bit different right from the beginning because #1: there was no anesthesiologist to be found anyplace in, around or near the O.R. that I was in! #2: I was not “out” or even a bit “drowsy” nor “sleepy” in any way, shape or form!!!  In fact, I was very much awake and it was like a nightmare from hell being strapped down to a a gurney, unable to move at all and the whole time nobody could hear my screams!  I felt totally “out of control while they were not paying any attention to what I was telling them. They were talking and joking around and I lay there wide awake and not even in the least bit of a “twilight” sleep or anything!! I started to scream uncontrollably saying “I can feel this!!!…I’m not asleep!! I’m not even drowsy! ….Hey…I’m still awake and I can FEEL everything!”  It was horrible and I already suffer from PTSD and that did not help my fears or anxiety levels at all! I also suffer, as I’ve mentioned, from the horrible neuro-autoimmune disease, which is very painful. It feels as though I am “on fire” and as if someone has poured “gasoline” on to me and I feel like I’m going to spontaneously combust or blow up or go “poof” in flames, I’m just so burning up hot so much of the time!

I begged and begged for them to put the catheter up through my groin area because I knew if they did it in my arm/hand, that would cause much more spread and problems for the pain disease, CRPS/RSD. I begged and once again, I was not listened to at all. The Dr decided that it’d be easier for him and he THOUGHT I’d heal faster if they put it into my right wrist. Well NOT true! He was wrong and it was HELL for a long few weeks. Not only was I having to recover from the pain of the needles, Catheter and scope or whatever they use all going through and invading my body and bothering my nerves so as to upset my RSD/CRPS so that I would then have to flare up and suffer for a couple of weeks or longer.!!  I ended up with painful swelling, bruises, redness and extra horrible pain from not only the pokes and shots etc. but from the catheter site. They continued on choosing not to listen to me and they went in through my wrist instead.  I was not asleep, nor was I even drowsy in the least!! I continued yelling to them that “I’m awake!!”…”I’m not asleep, can you tell??” …”It is hurting me terribly and it hurts like Hell, please stop and let me be somewhat “out of it”..” I just kept trying to tell them and in the background all I could hear was the young Dr. Trevax saying “1 mg Versed, or 1mg Dilauded” and he said it several times but nothing was happening to me. Maybe I was so afraid that I wasn’t allowing the medicine to work?? All I know is that I did NOT want to be awake for that test and I was totally and completely awake.  That is until they were wheeling me out of the door and into a “post op” room.  Then they wanted me to hurry up and go home but I fell asleep for 4 whole hours finally after they were done and they’d or someone listened to me and gave me enough to work and then I was “zonked out” for 4 hours straight!!!

I don’t think some of the little or smaller amounts of those big duty pain meds or whatever they were using with the pain meds, were working because My body had already at that time been used to the Fentanyl patch and the transbuccal Fentanyl. I don’t think anyone had seen those or heard of those transbuccal Fentanyl meds either and that’s why they didn’t listen to me. But I think it’s because my body had built up a tolerance and the small amounts that would normally work on a person of my (at the time) smaller stature, just would not work for me due to my medication regimen.  Also because of the Neurological pain, of my chronic nerve pain disease, “CRPS/RSD”, this caused their meds to not work well on me. Though had someone listened  to me and really realized how much medication that I was really taking under my Dr.’s care, they might’ve figured it out. But no way, no how was anyone listening to me that Day!

It was the Cardiac Cath from HELL!!! I would assume that this would not happen to you if you are going in for a Cardiac Catheterization.  Mostly, because they make sure that people are “out of it” in a Twilight type of sleep so they don’t have the anxiety and terror and pain that I experienced! I was just one of the Unlucky ones, I guess!

The worst part, aside from the horrible extra pain, then the 2 weeks of flares from my  CRPS; was what happened when I went back to my Gen. Cardiologist to explain to him the bad experience that I had. He just listened for a moment and then yelled at me and said very loudly “STOP IT!!”  I started to tear up and cry a bit because my normally gentle and caring Doc had just yelled at me! He yelled at me to “get over my past”! I guess he thought I was upset about the way it went because it brought up some bad memories and feelings. I was but that was not why I was telling him! I was telling him so others would not get hurt like I did.!!!

Needless to say, I’ve not been back to that Dr. and he was one of my favorites too !! From 1991 through about 2011, I guess?? I transferred all of my cardiac care over to my EPS/Autonomic Dysfunction/Pacemaker Dr or “Neuro-Cardiologist”. I decided that I wanted only one heart Dr to handle everything because of being on Blood thinners (Coumadin) and such..I liked the fact that my Neuro-Cardio office had a “Coumadin clinic” with nurses who actually called and reminded me to get my blood drawn. It made me feel more safe about taking an “unsafe” type of medication.

Well, Luvs….bye for now….this was the story of the “Cardiac Cath from Hell”…but I’m glad its over and I’m not sure when I’ll need another but my Cholesterol went from 204, when that heart doc freaked out on me to now its about 223 to 279 it has been!!! YIKES huh??? I do know that the Dr. who did the heart cath only got about 1/2 way done and finally stopped the test because I was crying and screaming so much. They did find 30% stenosis in my heart and they are saying that I do have “CAD”, but it’s not terrible yet or right now…we will see as time goes by.  I don’t eat too much bad stuff, but those Fentanyl transbuccal meds were sugar filled and bad for my teeth. Luckily for me, my dentist made me a special floride tray to use twice weekly and help with that so my teeth did not rot out!! Thank you God for that!!

Thank you for reading about my past experience in 2011, with the Cardiac Cath from Hell!! G’bye Luvs….Suzanne

   a picture of the Cath lab room!

    Here are a few pictures, to show you what I went through; though I was not drowsy in any way , shape or form…

my right RSD wrist after the cardiac cath….it hurts worse than it looks!
It hurts much more than it appears , believe me!!!!
a beautiful flower bouquet that I got from one of my very best friends…and she’s

like a “sister” to me !!

 some nice gifts I got when I was in so much pain afterwards