Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

Preventable Suicide Crime Scene


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!

Thank

One Bloggers’ Reaction To An Attack On Pain Patients!


Continue reading “One Bloggers’ Reaction To An Attack On Pain Patients!”

People With Pain Matter


People With Pain Matter! This Video is about my Chronic pain, CRPS Story & other Info. As well! A plea re: Opioids and correct information regarding subject also! #peoplewithpainmatter #painedlivesmatter #KeephopealiveforCRPS ….Opioids don’t kill people!~ People Kill themselves when they take Opioids with alchohol and illicit drugs like Heroin. Pain Patients control their medications and not the other way around as in drug addicts. Statistics prove that most overdose deaths are not reported correctly to the public. Chronic pain patients are “lumped together” with drug addicts and we are NOT!

 

Narcissism, The New Medical Specialty?


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Hello Luvs,

Usually I want to write about something that will be helpful for you all. Something to help inform or teach or tell you about. This time at first, I was thinking that this story was just a “whine” session. But I truly believe that I am discussing something with you that hopefully will “teach” you to “RUN” from Dr’s like this, just like I am doing! Of course it’s always up to you and your choice, but this time it is up to me and it is my choice to get the hell away from this GI Dr. and never go back again. Do not “Pass GO”….”do not look back”.

Since this past Summer when I stopped taking the Fentanyl Lollipops for my CRPS and several Chronic Pain Illnesses, I’ve had lower abdominal issues. It’s gotten progressively worse over time and now in the past month or so, I’ve lost about 8 -10 pounds. It is because when I do eat a regular”normal” sized meal; I get really sick. I start to sweat and have burning in my lower abdominal area. Then I feel very nauseous and get diarrhea and every once in awhile I also vomit (only about 10 % of the time). Since I have systemic CRPS, (which means that it is “full body” and inside of my body, they believe) I thought it might be that and the fact that I have Autonomic Neuropathy. I let it go for awhile and finally I made an appointment with my GI Dr.

I’ve only known this GI Dr. since my mother went to him. She died of colon cancer in 2002. Her case went on much too long before she went to get help.  But he seemed like a “funny” kind of guy and nice enough. I need to get colonoscopies every 5 years, so why not just go to someone that a family member knew and got along good enough with?  I have had either 2 or 3 colonoscopies now.  Either way I have only seen him a couple of times and in the GI procedure setting. This time I needed a Dr. to listen to my complaints and give me an idea on what to do. It’s to a point now that I am unable to eat a full meal without getting sick. I’ve lost about 10 lbs and I avoid eating as much as possible unless it’s tiny increments because I hate feeling that way. It’s even worse if you are not at home and at a restaurant.

I went to visit Dr. “M. D.”this past Monday and he was one of the most rude and “God Syndrome” type Dr’s that I’ve met on my long pain voyage.  Now I say “one of” because there have been quite a few  nasty, mean, flippant and/or “God Syndrome”people in the medical profession along my “post car accident injuries, surgeries and pain” journey. This was one of the top 3, I’m guessing. Just for a little “sidebar”: #1 was while I was going through Traumatic Brain Injury Rehabilitation for 3 years. I’d been to several shoulder physicians asking for help with a “nerve zing” that went down my left arm for the year following the accident. This one Dr.from Beaumont Hospital, a Dr. Roland Brandt, said to me “What part of “I can’t fix it for you, don’t you understand? Is it the brain injury?”. I ran out of there as fast as I could with my walker and my transportation driver, while the ladies working in the office seemed flabbergasted that he could’ve said something so horrible to someone in such pain and bad shape as I was in!  As for #2: I was at an Immunologist appt. and had been sent there because I have “Combined Immune Deficiency Disease”. He never took me into an exam room but we went straight to his office. My husband and I sat in these huge chairs that swallowed us up. While Dr. Tulin-Silver looked at me and said “So what is RDS”? My husband and I looked at each other and my husband knew exactly what I needed. We got up and left immediately. Ummm….Dr. Tulin-Silver, it’s called “RSD” and now it’s called “CRPS”. It is a #43 on the McGill pain scale and a very very painful nerve disease. The most painful one right up there with cancer and the pain is equal to childbirth and amputation of a digit, according that same pain scale. By the way, I went to another shoulder Dr. and I didn’t give up. The last one I went to, Dr. J. Michaelson, touched my shoulder or arm in a certain way so that I jumped! He knew exactly what it was. He told me that for that past year I’d had a ruptured biceps tendon, aside from the torn rotator cuffs. It had grown wrong for a year because no one would listen to me. He had to do Open shoulder surgery and drill into my bone. He had to unattach the biceps tendon and reattach it with two screws! That was a painful surgery! He also sent me to Cleveland Clinic for help with my other shoulder. Now that’s a good Dr.!

Let’s get back to my appointment with Dr. “M.D.”,t he GI specialist, this past Monday, February 15, 2016. I told him what was wrong and he first said “Boy you are on a BOATLOAD of MEDS”! He had blinders on and was totally convinced that I was just “stopped up with stool”. He said “constipation causes diarrhea”. Ok, I get that, but the other symptoms with the nausea, sweating and being unable to eat a full meal? Plus the fact that I’m losing weight now because I’m becoming afraid to eat a full meal. It’s gotten worse since I went OFF the Fentanyl Lollipops, this past July 2016.  I’d been on those  for 12 years! I’m on much less medicine now than I was, but he would not listen to me! He made some horrible comments to my husband and to me and I left that office in tears. I had asked for a phone call from him. This is Saturday of the same week and he’s never called me back!

As we were sitting in his office he said to my husband, as he was skimming over the records and notes that I’d brought with me; “Man, OH Man….You got more than you bargained for huh?….I don’t know if  I’d have gone through with marrying her? If I had known ahead of time, I don’t think I would have gone through with it!”  First of all, how does anyone “know ahead of time” anything that is going to happen? Secondly, what about “for better or for worse, in sickness and in health….til death do us part”?   Lastly, I was an innocent passenger of a car that was being driven by my husband and through NO FAULT of his, a man ran through a red light while fighting with his wife. This caused a “T-bone” car accident and I was hurt badly.  Too many injuries and surgeries to list them all here today; and progressively making life more hard while things keep getting worse!   That Dr. then looked at me and said “He still with you ?!” (Now these are not exact word for word accounts, but between my husband and myself, this is the exact idea and very close to what he said to us)….He also looked me in the eye and laughingly, but sickly and seriously said ” …and with all that is wrong and all of those/these medications for all of this time, your Liver is just an innocent bystander in all of this”!

I know can you even believe this guy? I know the pain meds that I need to live with now, because of the multiple injuries from a car accident, 8 surgeries and then getting several pain illnesses including the systemic/full body CRPS and so much more can cause a big strain on the liver. This is why I ask my GP to get the AST and ALT  labs done every 3 months. Hopefully, we would catch anything wrong, coming up very early on and would be able to switch to a different medication or something? It was just an unkind and flippant way to say that to a person sitting there asking for help with a different issue. He was trying to tell me/us that I’m going to die sooner than later, I’m guessing?

The other few times that I’ve had the colonoscopies done by him, he hadn’t seen me in the office and I’m guessing he didn’t really look at my chart or know anything about me? But he did see that I was a pretty thin lady back then and so he gave me a different prep for the procedcure. I told him back then and I told him this time, that I had been abused as a child and my parents had given me “syrup of Ipecac” when I was given any food at someone else’s house. I had to be chased around the kitchen, while I was screaming and crying because I was forced to take a couple of Tablespoons of this nasty “medicine” and then forced to drink several glasses of water. I was put on a shower curtain, on the living room floor with a bucket and sitting on a little wooden rocker, to wait for the explosive vomiting that was to come and get rid of any food that might “make me fat”. He told me that I just had to: stop eating solid food and have clear liquids for 2 days instead of the usual 1 day. I was to take 2 Ducolax pills at 5 pm and 4 more at 9:00 pm the night prior to the procedure! That was all I had to do! He never complained or could not do the test! He never said a word to me about anything except that it was “all good, fine, OK” and then “see you in 5 years!”

I probably weigh 25 more pounds than I did 5 years ago, but I’m more “normal” weight now and I’ve even lost 8-10 lbs in these past few months.  So I tried to remind him  that I could not do the “normal” prep. I would not do well with the “explosive diarrhea” and my atrial fibrillation, pacemaker, history of heart attack and a Stroke/CVA. He said “stroke???”….”You LOOK FINE! I don’t see any deficits?!!” (**There was a cane sitting next to me in my chair. He had not seen me walk and because I wear make up and choose to dress nice, does not make me “FINE”).  I tried to tell him that I had eyes that don’t close when I sleep because of the nerve damage from the injury to the Cerebellum with the TBI and then the stroke caused right side weakness and my right foot has worse “foot drop” than left. The right side of my mouth goes downward especially when I am tired. Also, if you look at some photographs of me, you’ll see that one eye does something different than the other eye as well as my mouth not being the same on both sides of my smile most of the times.  He did not listen, and he told me to “HOP UP onto his table”.  The table for an exam was pretty high and he wanted me to “hop up onto it”. I looked at my husband and of course, being the woman that I’ve always been, I tried to do it. I was unable to get up there and asked for my husbands help and then the Dr. proceeded to lower the table so I could get up on it. Was that some sort of test? Was he trying to see if I could or couldn’t get up on it? Why was he treating me this way? This was not an IME by the insurance company! I was paying him to treat me this way!

So he told me again that he totally thinks that the only thing wrong with me is that I’m totally “plugged up with stool” and I needed an Abdominal X-ray and the colonoscopy. I told him again that I usually don’t have to do the big prep like other people have to do because I’m unable to drink that liquid. I vomit and gag while trying to drink it. So he instead, gave me a “OMNI-PREP” of 32 pills to take “4 every 15 minutes” from 5 -9pm the night prior to the test. But ALSO, to “not eat anything but clear liquids for 2 days and then the first night to drink a bottle of citrus magnesium  in the evening with 7 up”. This prep is more than my 180 lb husband has to do??? I started crying and he left. I asked the ladies at the front office to please have him call me about the prep. Why was this time different from the others? They said he would call. This is Saturday and that was last Monday, he never called.

I had the X-ray done and I never heard from him so I went to pick up the report results myself. We took them to my GP appointment. So it says that I have “moderate stool” in my colon, which is perfectly normal. I’m not “plugged up” and I have diarrhea, so I’m surprised there was even a “moderate” amount. It also says that I have some Osseous calcifications in my pelvis called “Phleboliths”. They are supposedly not clinically significant but can cause or come from chronic constipation. I’ve had that problem for a long time since being on those older meds for pain. But now that I’m on 1/2 the amount I was on before this past July, it’s turned around  and turned into diarrhea and nausea after eating, plus a burining feeling. My G.P. sent me to a different GI Dr. and I have an appointment on March 30th. I will never go back to Dr. “M. D.” again. My husband says not to write or call anyone because it won’t make a difference. I’d like to call and tell someone, but if it won’t matter, I guess it won’t change anything. I just need to go elsewhere.

So he was 100% wrong and I’m not “plugged up” to the eyeballs with stool and I definitely don’t need a 2 day prep taking a whole bottle of citrus magnesium the first night and then 32 pills the next night? That’s totally ridiculous and my G.P. even said that was “over kill”. I called my Neuro-Cardiologist and the Coumadin Clinic….because the nurses told me to “stop taking my Coumadin also”! NO….NO…No…Never stop taking your Coumadin (blood thinner for history of stroke and for atrial fibrillation, an arrythmia in my heart) unless or until your heart Dr. tells you to do so! The nurses at the Coumadin Clinic said they were going to talk to my Neuro-cardiologist and tell him about this and they were appalled by this “overkill prep” on someone in the pain that I am in and with the illnesses that I have! I honestly believe that this prep could have hurt me or killed me. I also have a pacemaker and I’m just still honestly in shock to be treated this way because once again “I LOOK FINE”!

Many of the illnesses that I have are called “Invisible Diseases” or “Invisible Disablilities”. I have even done a commercial for the Invisible Disablilites Association’s, You Tube Channel. It is called “Invisible No More”. I am going to post my Video, the one that I did for them a couple of years ago in 2013. But I wanted to blog about this experience because if this should happen to you…..RUN….DO NOT PASS GO…..DO NOT COLLECT $200.00! Find another Dr. and do not go back to someone who treats a person this way.  I did not post his name because I did not want to do that to anyone except the Dr’s that I’d seen several years ago and so I decided to post their names. This guy, is in my hospital system and I don’t want to run into him someday while inpatient and feeling “helpless”; so I chose not to print his name. Thank you so much for coming here to read my blog and I hope that I can help someone with some of the things that I write about.

 

 

Day #1 Stopping Fentanyl For Pain


Well, the day is here…It is July 13, 2015 and my new pain Dr. has instructed me to stop taking the Fentanyl suckers for BT pain today! I had my very last sucker at 4:30 this morning. I’m feeling sick and scared and jumpy and nauseated. I have a stomach ache and diarrhea and I feel like I want to crawl out of my skin. I’m even taking some Ativan to help with this,but nothing is really helping. I’ve been on these suckers since 2005 May!!! I had been on up to 20 or so suckers daily when  my old GP, Dr. Peter Bullach MD, was my GP from 2002 until he left in December 2014.  The day he told me he was leaving he still gave me the script for the suckers and I had been on 3 different strengths and almost 8 per day of each, or 7 sometimes, depending on the strength I had left.  I never took an Aspirin for  pain in the past, prior to the car accident and then getting the CRPS and then it going “SYSTEMIC”,  along with having : Degenerative Disc disease and Chiari I Malformation, Polyneuropathy, and Radiculopathy RA, OA Dysautonomia/POTS, Hypermobility and more. It’s just too much for one person to take. I know they say that “God doesn’t give you more than you can handle but I”m just about out of “handling anything”.

My disability started in 1998 with PTSD and CKDII & I was approved for SSDI first time I requested. I am not new to pain, but used to emotional pain. Since 2002, and the MVA, I’ve had the added misery of the physical pain. A person can only take so much and this is going to be a short post as I thought I’d do a sort of  “Journey through my withdrawals from the Fentanyl Lollipops”.  I want to share this experience so others will  know, see and also understand what it may feel like for them to go through withdrawals too.

Today is day #1 and honestly, I’m very lucky and very glad that I had started weaning myself, on my own since January 2015. When I found out in December that my Dr. was leaving, I got very afraid. I started going down a bit on my own. Thank goodness I did that because I may be dead or even more ill than I am now, if I hadn’t. I went down about 80% and then when I finally found and met my new pain Dr. he told me to “go to sleep on the 12 th of July and use a Fentanyl sucker and wake up and never have another again.”  He told me that “they are very dangerous. They are for only “end of life” terminal illnesses. He told me that “I never should have been on them unless I had no stomach or could not eat” etc.  I was shocked because I’d been on them without any problems really until this year since  2005. Hey, did you know that these kinds of meds can cause a Heart attack AND /OR a stroke?? Well, guess what???? I started these in May of 2005 just after my heart attack, but I did in fact have a heart attack AND a CVA in 2006. Be very careful….just be very very careful.

Well, this morning I was craving the suckers more and every night lately I’ve woken up in piles of sweat and feeling so hot and “on fire” as if I was going to “blow up”. I feel awful as it is 8:45 pm now. I wasn’t able to do much of anything today. My husband has been awesome, as he always has been since the beginning.  I can tell he is worried because I usually sit in my “Lazy Boy” chair when I’m not doing so great and in the evenings, but today I’ve taken to the couch. I’ve been laying on the couch; in and out of the bathroom and unable to eat or even drink too much. I managed some chicken and a few bites of baked potato for dinner but that was it today. I have stomach cramps, a headache and I feel achy all over. My body feels as thought it’s on fire and my true places in  injury and insult to my body hurt more than usual and I can feel each individual spot and at this point I’m not sure when or if I’ll be able to go out as I’ve been doing on the other meds.

I feel horrible, my head hurts even and every sound, smell and sight is making it worse as time is going  by. I’m wondering  if I’ll be worse before I’m better? I will keep you posted as I’m going to be keeping a diary here of my journey through withdrawals because I pray that I can inform and help someone; with what I’m going through.  First, right off the bat, I would tell you to make sure that you have a good pain Dr. that you trust who is on your side.  Listen to them and do what they tell you to do.  Make sure that you have something to take the place in your body of the drug that you are trying to get off of.  For me, the pain Doc switched me to another Opiod that he feels is more safe. He to ld me that “my body will be tricked into having something there to keep me safe from seizures , heart attack and/or death.  My brain will still want me to have the lollipops but I have to fight that.  I don’t understand that  or I should say that I didn’t understand that feeling until today. I literally feel terrible. I’ve tried to keep “dum dum suckers” nearby and Tic Tacs close. I just still feel sick, nauseous, in horrible pain and nothing is working to alleviate that feeling.

I can do this as I’ve been through so much, if you have even read some of the parts of this blog, you will understand that. There are some “private” posts but please feel free to read them and all you need to do is email me :  jewelrymkr@aol.com and just ask me for the Password to the private posts in my “Tears of Truth” Blog. I will send it on to you and I have it there just for the safety of  my family , kids and grandkids.  They don’t need to read all that has happened to me in life. Although my own kids saw some of it and know a lot of it already.  I still want to protect them and anyone else who can still hurt me or thinks they can. This way  I have some control..

Thank you for reading and if you are ever going through withdrawals, make sure, please  make sure that you have a trusted Physician in the plan and someone who loves you there with you while you go through it all!  This is only the near end of Day #1 and for now I cannot see the end in sight.  I pray that I can make it through this without a Hospital or an ER as they know nothing about pain and they treat us horrible….honestly.  I will keep you posted and this diary or journal will be my writings for the next few days or however long it takes. Pray for me..thank you for being here/there for me along the way….love, Suzimage image

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


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

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Hello Luvs,

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

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

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

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

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

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

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

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

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

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

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