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!

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June Is PTSD Awareness Month


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With all of the different awareness ribbons and events, fundraisers and 5k walks for different illnesses out there; not many want to talk about PTSD. During the month of June each year, time is set aside to remember the illness called “Post Traumatic Stress Disorder”.  It seems to be an awareness month that we don’t talk much about but it is a very real illness.  PTSD is a disorder which can occur when there is a failure to recover after experiencing or witnessing a shocking, scary, dangerous and/or terryifying event or events. According to the Mayo Clinic, there are more that 3 million cases each year in the United States.

This illness can last months or years, with certain words, ideas and even smells that trigger the memories of the trauma. Along with the memories that return, there are intense emotional and physical feelings and reactions in the body.  Some of the symptoms of PTSD might include things like depressed mood, anxiety, nightmares, flashbacks, heightened “fight or flight” response and avoidance of situations that bring back the trauma.  There is treatment for this illness which may include Psychotherapy, behavioral therapy and medication.

There is a natural “fight or flight” response in our bodies that is supposed to warn us when there is danger near or that something terrifying might happen.  It is normal to feel afraid during and after a traumatic event or situation occurs. This fear is something that brings about a chemical change in the body to protect us from whatever may be happening that is fearful.  It is the body’s way to help defend against or avoid danger or dangerous situations.  Most people recover quickly and naturally from the initial symptoms of a fearful experience.  There are those who continue to experience problems and feel stressed or frightened even when they aren’t in danger any longer.  These people are sometimes diagnosed with PTSD or Post Traumatic Stress Disorder.

Not everyone who experiences PTSD had been through something very dangerous, but instead may have experienced the loss of someone very close to them. The symptoms usually begin within 3 months of the traumatic event, but often can occur immediately.  These symptoms must last more than  one month  and be severe enough to interfere with working and personal relationships, to be considered true PTSD.  Some people can and will recover within 6 months, some have chronic symptoms.  A Doctor who has experience with mental illness, such as a PHD Psychologist, Psychotherapist or Psychiatrist is needed to diagnose PTSD properly.

One of the most common things that people experience with having PTSD is called “flashbacks”.  This happens when you relive the traumatic experience inside of your mind or body over and over.  There are physical symptoms like a fast or racing heart beat, sweating, bad dreams and invasive fearful thoughts.  People with PTSD also try to avoid smells, places and situations that remind them of the experience(s). An example might be a bad car accident; afterwards a person with PTSD might not want to drive a car or even be a passenger.  When you have this illness you are or can be easily startled, you may feel “on edge” and have insomnia or have trouble sleeping. When someone experiences these unpleasant feelings after a traumatic event for just a short time afterwards, it is called ASD, or Acute Stress Disorder.  When they last longer and affect a persons ability to function, it is then called PTSD.

If you would like to participate in the June PTSD awareness month events on Social media, you can visit http://www.ptsd.va.gov/about/ptsd-awareness/promo material awareness.asp.  You can also follow the National Center for PTSD on Facebook and Twitter.  Those links can be found at the bottom of the website at http://www.ptsd.va.gov.  No matter how much you think you know about PTSD, there is always more to learn and ongoing research, new treatments etc.  Please take action, help those who suffer and live with this illness by visiting:  www.ptsd.va.gov/public/wher0to-get-help.asp.  Spread awareness as often as you can, but especially during the month of June each year.  This is the month which is set aside for people to share information and make people more aware of this debilitating condition that I, and many others live with. Take the mystery out of this condition, learn about it, find out who is affected an how you can help.

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One Bloggers’ Reaction To An Attack On Pain Patients!


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

This is My Fight …….


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This post stems from some horrible comments that were made on one of my videos on YOU TUBE. MY one YOU TUBE channel is mostly dedicated to information and helping others struggling with chronic pain and /or Invisible Diseases or disabilities. I am not writing this post to “brag” about what I do, because it’s not all for unselfish reasons. It also helps me continue to live on and to want to continue to try and move on beyond the illnesses and the pain that I live with every single day. I was thinking about just deleting the mean comments that someone who says their name is “Jose'”, wrote to me. I thought about not responding and never even saying anything back to this person or these people posing as someone named “Jose'”. I am going to copy and paste the comments here; that were put after my very short video.  The video is one that I made after only day #1 going through withdrawals from being on the Fentanyl lollipops for 12 years and 20 + per day. It was prescribed by my Dr’ of 14 yrs or so. It was Ok’d by the insurance companies and the pharmacy never said a word. I was and am a “lay” person and I did what I was told. I had been on 2 x 100’s strength Fentanyl patches at a time and changed them every 48 hours. At the same time I was on those lollipops. I was put on them at first because every pain medication “ate up my stomach”. Nothing I took by mouth worked because it made me sick to my stomach or burned badly.  So I was put on the lollipops and the patch. One day when I fell and my pain was made so much worse, my GP; the M.D. that had me on those dosages, told me to “go ahead and start wearing 2 of the 100 strength patches”. I did what I was told just as I’ve done my whole life. That is why I’ve gone through so much abuse and trauma because of trying to be the “good girl” and do whatever someone who I thought was a person in “power” or who had “power over me “(so I thought) told me to do.

The reason that I posted this Artistic Sign Language cover song by Rachel Platten, called “Fight Song”; is to show how I am feeling much better now than I was during that “withdrawals day #1 video”. I only did that withdrawal video to show others what it might be like for them to go through withdrawals and what it might feel like. I then posted my new YOU TUBE page called ASLSuzyQ because that is where I put my ASL cover songs. I lost my career due to PTSD, pain, nerve hearing loss and more pain, 8 surgeries, a TBI (Traumatic Brain Injury), disabling pain and illnesses. But now I do little tiny bits of ASL to songs because it cheers me up and I hope it cheers up others as well.  I can only do it for a little while and the pain afterwards is debilitating. I cannot even hear the song with the music like I could in the past as I acquired 2 hearing aids due to nerve hearing loss.

I am now going to show you and copy and paste exactly what this/these person(s) wrote to me . Then following those comments, I will post my response to the comments. I’m not sure if this person is really someone named “Jose'” because their “account” in You Tube is not a real account. This person or person may even be some  “bullies” that had popped into my life recently. I’d been abused and in fact I’m used to spotting Narcissist’s and Malignant Narcissistic abusers. Therefore I “popped” them right out of my life as fast as they tried to hurt me and attempted to ruin my long time friendships and my reputation. But my reputation speaks for itself and I don’t have to defend my honor to anyone. I know who I am and what I’ve done. I know what I am doing and hopefully what I will continue to try and do.  I’m a good and kind person. I’m not perfect, but the only one who can judge me is God.  Here is what this person or these persons wrote to me and then afterwards is my response:

SPEAK UP! STOP FEELING SORRY FOR YOURSELF. I’M ON 4-100 PATCHES. You slowly come off them by matching the withdrawl symptoms. Stop and think about it. Some of us have it worse than you. get a grip

-Hello Jose, Im sorry you are such an angry man. It’s too bad that you judge before you know anything at all about me or my life or my background . You know nothing of me or what I’ve been through. Actually I was told by SSDI that I “am the worst case of child abuse/trauma that they’d seen in the past 36 yrs”, that was when i first got on disability in 1998. I also at that time had and still have CKDII now III. I don’t feel sorry for myself, in fact I’m a health advocate /activist. I’m an ambassador for the U.S. Pain association and a Mentor for RSDHOPE.org. I run 2 support groups with over 750 people in chronic pain. I’ve done commercial for Invisible diseases association and I’ve been a “chemo-angel” since 2005. I help others and I don’t hurt people, especially other’s in pain, like me. My new pain Dr. who helped me through the withdrawals in July 2015, this Summer, when I made this video, couldn’t believe how many “real” pain illnesses I have and deal with. He and all of my Dr’s that I’ve had for many years, tell me “how proud they are of me” for all I’ve been through and then to be left like that on 2 x 100 fentanyl patches (weighing 120 lbs at 5’5″ tall and 53 yrs old!!) and 20 + fentanyl lollipops daily. I had to go down slowly on my own, which I did. I then got to 2 per day or 3 and then I took zero after the 12th of July this past year. I’ve never had one again in all of 7 months. I’m proud of myself. I didnt ‘have to go anyplace to be “treated” and a kind pain Dr. took me and is proud of me for all that I have and all that I try to do for others. I only made the video to help others to see what it may be like at first and then I did the other video’s such as “stand by you” in ASL by Rachel Platten and many others, since then to show them and everyone that I did it and can do it and am doing it. I don’t feel sorry for myself very often, but sometimes I allow it for a few moments. I have been a survivor of childhood trauma/abuse since I can remember, then 2 marriages- abusive and one to an ex cop who’s not one any longer but not because of me, because he hurt someone after me. I finally found my soul-mate and actually today, Valentines day we are celebrating our 19th anniversary. Only some of my chronic pain illnesses include: full body/systemic CRPS, Polyneuropathy in Collagen Vascular Disease, Autonomic Neuropathy, Prinzmetal angina/coronary spasms, CKDIII, Rheumatoid arthritis, Osteoarthritis, Coronary artery disease, right long thoracic nerve neuropathy, I have Long QT syndrome in my heart, atrial fibrillation and have a pacemaker. I had heart surgery in 2013 and my CRPS went inside of my body at that time. Im on my 2nd pacemaker. I had a heart attack in May 2005 and a CVA or stroke in 2006, along with 2 “mini” strokes since then. I’m on Coumadin/blood thinners for that. I have Arnold Chiari Malformation I and Multiple herniated/bulging discs in my Lower back and neck at C 4/5 and C5/6 and L4/5, S-1….I have SCID or “severe combined immune deficiency disease”, along with Eczema secondary to CRPS, Asthma, nerve hearing loss with 2 hearing aids and I lost the career that I went to College for …I was an INterpreter for the Deaf and now I sign songs and do artistic signing of covers of songs when I’m able. I’ve had 8 surgeries and all of this happened after a car accident in 2002 ,when a man ran a red light while fighting with his wife. I was knocked unconscious and for 30 minutes or so I’m told. I was also in brain injury rehabilitation for 3 yrs outpatient, because I suffered a Traumatic brain injury. Luckily I found the best Dr’s and got leg braces, a wheelchair, walker and motorized scooter and loftstrand crutches to help me along. I use a cane sometimes when that’s all I need; other times I need the wheelchair depending on my pain that day. I didn’t need to explain all of this,but I felt that if someone who actually has “feelings” and “compassion” ever reads this..they will see how mean and uncaring others can be when they are ignorant to the situation and know nothing of the person they call “feeling sorry for herself”. There will always be people worse off than me and than you. There will always be people better off than we two….I already know that my spirit and my heart are much much better off than you. You can be “sicker” than me if that’s what you wish sir. You can “win”….you can have that place if you want it. I don’t want to be the “sicker” one. I want to be the one who survived to help others and work with others to help them to keep on wanting to survive and never give up… Good day.

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So that is what they/he/she said to me and this was my response. My husband asked me “why did you bother to write back”? He told me that I should have just denied the comments and not approved them.  But I wanted others to see how people can be so mean, even when you are trying to be helpful and no matter who you are or how “good” you try to be, there will always be someone who will judge you and try to hurt you. The only way they succeed is if you allow that hurt and meanness to get into your heart. It will not penetrate my heart because I want to be a good, kind and thoughtful person. I want to help others and I will continue to do so as long as I possibly can. People like this are one or more of many things:  Mentally ill, abusive, Narcissistic and /or Malignant Narcissistic abusers; or all of the above!! I had to show people that no matter what meanness or hurtfulness comes my way or may come your way; don’t ever give in or give up. I won’t either!
I do have some “protected” posts or “private” posts. For my own safety and due to the abusers in my life still today; I have had to do this. If you wish to read those posts, please email me and I will send you the password. Thank you so much…Im sorry this post was not uplifting but I just wanted to show that no matter how hard someone tries to be good and kind and even try to help others, there are always bullies and Malignant Narcissist’s out there ready to “Pounce” and they’ll try to hurt you.  Just don’t let them hurt you or your spirit. Know yourself and what is in your heart and soul.
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ADDITION:
Well, I was going to copy and Paste the “apology” that I got from this person. I went back to go and do that so you could see that by responding in an assertive way and making the person responsible for what they did, said….sometimes people will rethink what they’ve said or done. In this case, Jose’ decided to delete his message, which in turn deleted my response. Therefore, it is all as it never happened now on YOU TUBE! But it is here, in my blog and I hope that I’ve learned something and I pray that others have also learned from this post. Thank you and I pray that you have a low pain day and a good day today and every day…

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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)


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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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