Kratom, Great Help For Most but Deadly for Some


Hello Luvs,

There was a bit of a debate in one of my groups, regarding Kratom. I know it’s so helpful for many people. I do not think the government should step in and ban this too!! It’s relatively safe but I was discussing that it can and may help loads of chronic pain patients, but not everyone!

Like anything else, you need to discuss it with your Dr ahead of time and please get an EKG first. I have several complicated heart arrhythmias. One is pretty uncommon but most people don’t even know that they have it until they die from “sudden cardiac death” (which is its only symptom). It’s called “Long QT syndrome”. There are many thousands of medications on the “DO NOT TAKE” list with long QT syndrome. The list updates daily and herbs such as Kratom, Turmeric & Ginseng are among the things that people with LQTS cannot take. Please just be safe and I hope you continue to have or get access to whatever kind of pain relief works for you!

But please check out this article I’ve posted below:

Just a little was info about Kratom before you take it

Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them:

Nowhere To Run



Going to the doctors office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5 year old deep down inside, more afraid of doctors than ever before. Why do they have so much power over us? Why do some use that power to make us feel inferior? Eleanor Roosevelt said “No one can makes us feel inferior without our consent”, but I feel it and I don’t remember giving anyone permission? We are living in difficult times for anyone who has debilitating, intractable chronic pain. There also is no place to “run”, no matter how big your suitcase is or how much money you have. There’s no grandparents at the other end to scoop you up and tell you that “it’s going to be OK”. Mostly, because it’s NOT OK.
Have you ever seen an action/crime movie where an innocent person was being tortured and/or thrown in jail, for something they did not do? A person being “beat up” but totally innocent? This is what is happening to the chronic pain patients in America today. I’m going to share a short story about what happened to me the other day. We always think these things only happen to “other people”. That “it won’t happen to us”. That is wrong and untrue. We live in a civilized nation, or do we? How can they treat us like this?
Here is a summary of what happens to me every 30 days. Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my upcoming appointment, I get more frequent stomach aches. I want to stay inside more and just sit in my “Lazy Boy” chair, with my blanket and with my cat cuddled up next to me. I wonder if “this will be the visit that “it” happens to me”? As the appointment time gets closer, I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. Then the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house. I cannot leave because no matter how much I talk myself out of these feelings, they won’t go away. My blood pressure, which has normally been low to normal, is very high for me at about 150/95 to 155/100. I feel sick and afraid. But I’ve never smoked anything and I have never taken any kind of medication or “drug” that was not specifically prescribed to me by a licensed physician.
The time of the appointment grows closer and I get even more distressed. Sometimes I cry and I just verbalize to my husband that “I don’t want to go”. I wonder why is life so cruel to those who are already living with agonizing pain and illness? I’m not one to feel sorry for myself. I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. He has no reason to believe anyone and he must go by what he sees in text. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.
It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30 minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”. We arrive at the pain Dr.s office. There are cameras everywhere, in the parking lot and in the office. For all I know, theres one in the restroom? I know that I left a urine sample last time, so I feel pretty calm about that not going wrong. I had not heard from them, so Im just sure that there’s no “false positives” with me. That only happens to other people, right?
We sign in at the front desk. I answer the several questions that I am asked every 30 days now. For crying out loud, what changes in 30 days? It’s just too often to put people through this, aside from the cost. My name is called and my stomach is in knots. I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”. I hear the footsteps faintly coming down the hallway and then a knock at the door. I calm my inner fears and I tell myself “Suzanne you are a good person. You’ve never done anything wrong and you follow the directions exactly. This is crazy, why are you so afraid?” I’m afraid because of the horror stories of others who are also innocent. The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue. But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab. In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.” I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had ben positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guiilty”. It doesn’t matter that these tests are many times false positives and false negatives. Nothing matters anymore. The truth doesn’t matter any longer. I was literally terrified just hearing those words come out of his mouth. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.
We had received a $265.00 bill from a lab just a few days prior. We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it? Next time there is a “false positive”,they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever? It was explained to me that no matter who I am, how exemplary of a patient I might be and no matter how long I’ve been going there with a perfect “record”. I will be treated as if it were my first visit and there are no second chances. We are perceived as “guilty, bad and lying” if the tests says it is so. Yes, there is a second test, but then you are hit with this grossly overblown bill and there’s no way to pay for it. The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means every once in awhile there can be a glitch or a mistake. That means that every once in awhile someone gets hit with this huge bill, through no fault of their own.
I am tired of people telling me that I should not be on this medication. People who are supposed to love me or at least care about me. It feels like nobody understands the predicament we are in. I take medicine that still helps to relieve my pain even though I’ve been on it for quite awhile. I have almost no side effects and I’ve tried many many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. I get the pleasure of being a grandmother. Without it, I would be in bed or in my chair 24/7. I’ve been there and done that. I don’t want to go back. I’m tired of being judged by people who don’t know me. I don’t get a “high”, and I never take more than prescribed. Why can’t I just continue to do what has worked for me? Why can’t we all? Why do we have to feel persecuted and judged? Why do we need to feel traumatized and terrorized every 30 days, to the point of feeling physically ill?
My story up to this point, ended on a positive note. My Dr. still had to send out the first test because he said that “it is the law”. I have never done anything remotely considered to be “bad” or “wrong” and definitely not “illegal”. I’m a good person who graduated college with honors. I raised my daughters mainly by myself for about 8 or 9 years. I worked full time and took care of everything and everyone who needed me. I try to be kind, thoughtful and I am always trying to think of new ways to help others. Nobody deserves to feel this way. Theres something definitely wrong with this and someone needs to fix it.

Opioids, Cannabis And Complimentary Therapies


When our Attorney general, Jeff Sessions told the pain community to take an Aspirin and tough it out; I hope he didn’t mean those living with cancer pain, A.S., CRPS, E.D.S. and many of the high pain chronic illnesses? I’m guessing that he must have meant that more for someone who strained their back by lifting a TV or a dresser that was too heavy? Maybe not? But that’s my guess. Along those same lines are “Complimentary Therapies”. In my personal opinion, if Acupuncture works for your kind of pain, that is great. If something called “grounding”, where walking barefoot and reconnecting with the earths energy can help your pain, thats wonderful too! Whatever works to diminish your pain, that’s what matters most. Insurance companies should be more than willing to pay for these complimentary therapies ahead of any major or minor invasive or noninvasive surgeries! There should be choices available to those who want and need them. But as much as mindfulness, guided imagery and “thinking your pain away”, are awesome ideas; I don’t think they generally help to curtail certain high levels of pain and pain illnesses.

Medical cannabis is helping many chronic pain patients with nausea, physical withdrawal symptoms and chronic pain. The Marijuana Effective Drug Studies (MEDS) Act, introduced by U.S. Senator Orrin Hatch (R-UT). He has proposed a bill, (S.1803) to encourage scientific research on cannabis as an effective and safe medical treatment. We need to advocate for this bill because Medical cannabis can be helpful to some people who live with chronic conditions. The U.S. Pain Foundation along with the American Pain Society support this Act.

We are fighting for a variety of methods to help those with high pain illnesses to deal with their pain. I’ve read that Kratom is another plant based fighter against chronic pain. These can be wonderful tools to help many persons. We need to keep fighting for many different methods to help with chronic pain, because we are all individuals and what works for one person, does not always work for another. Pain patients should be able to use whatever method of pain relief works for them because individual metabolisms vary. The therapies available to us, help many different kinds of chronic pain. Each method contains various medicinal qualities that work differently in each patient. It’s also true that one specific method of pain relief doesn’t help everyone. Nobody should be forced into taking or doing something that they don’t feel comfortable with.

The same is true with surgeries and injections. In my personal opinion, these continuous injections into the spine, are just “money makers” for the chronic pain clinics who are now too afraid to prescribe opioids. Even though the CDC told us that the 2016 guidelines

were just a “guide” and they are not the law. It seems as though the majority of pain clinics and Doctors jumped on the bandwagon to demonize opioids after the guidelines were disclosed. Now we are seeing suicides go up with the decrease in prescribing of Opioids for chronic pain illnesses. It seems as though there is a correlation between the lowering of Opioid prescribing and an increase in surgeries for Spinal cord stimulators, pain pumps and nerve ablations. But no one should EVER be forced into having an invasive surgery that could possibly cause more pain and stress for these already medically fragile human beings. My physical therapist told me that the SCS means surgically putting a catheter into your spine to give small electric shocks in order make you think of those shocks instead of the pain! She told me that our brain cannot think of pain and pleasure at the same time. I’m guessing that some think these electric shocks are pleasurable? I had a T.E.N.S. unit soon after my car accident and it did help with muscular pain and soft tissue damage, slightly. I have read that they’re (SCS) most helpful in people who have low back pain, leg pain or one area of pain and not multiple pain issues (http://aansneurosurgeon.org/features/neurosurgeons-rise-address-opioid-crisis-america/).

My previous pain clinic physician informed me that the intrathecal pain pump administers approximately 1/300th of the amount of oral medication needed to relieve high amounts of chronic pain. But this is also living with a literal “hockey puck” inside of your gut forever and and depending on one person to fill it! That same Dr., told me that I would be “married to him” as a patient, for life. In my research, I have found that if your physician leaves his practice, retires or if you have complications in another city/state or country; your pretty much out of luck, in all honesty! Emergency rooms and other physicians won’t normally touch another Dr’s patient with a pain pump! Again, this is another invasive surgery where your body is being cut and something is put into your spine. Complications stem from worsening pain to paralysis. Here is an article that speaks to some of the complications (http://www.stltoday.com/lifestyles/health-med-fit/health/to-your-good-health/implanted-back-pain-pump-is-an-option-for-very-few/article_474eed95-3f54-59ca-9b9b-9f8f941c0300.html). The nerve ablation or Radiofrequency Neurotomy, means literally “burning” nerves to “create a heat lesion”, thus, making the nerves lose functionality (https://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain). Each person feeling relief from chronic pain, is all that matters. We should be able to have choices available to discuss with our own physicians.

Someone who knows our past history of illness and our current diseases. A Dr. who can discuss these different methods with us and help us determine which route is best for each individual.

This past week I read an article in “Clinical Pain Advisor” (https://www.clinicalpainadvisor.com/treatments/epidural-steroid-injections-postmenopausal-women-bone-mineral-density-vertebral-fractures/article/739080/) that touched on the issues with the Epidural Steroid Injections. After having many of these injections in the first years following my car accident, now I find out that they cause decreased bone mineral density and increased risks for vertebral fractures. It appears that there are complications with every method of pain relief. We just need to be able to choose what is best for our own body. Nobody should be forced into surgeries, Acupuncture, Marijuana or Opioids. On the other hand, if one method, such as Opioids, have worked for you and you’ve literally tried many other methods of pain relief, then you should be able to continue. Taking a pill that has little or no side effects for a group of people who are doing well with Opioid therapy, should be still allowed and not demonized. I believe there will always be a place for Opioids for the relief of chronic pain. If you have been taking them for many years and are stable, then obviously you are not “addicted”. Don’t forget that there is a difference between addiction and dependency. Also, don’t forget to support the “Opioids and Stop Pain Act” (S.2260/H.R. 4733), introduced by Senator Schatz and Representatives Welch & MicKinley. The U.S. Pain Foundation, along with 30 other Pain organizations support this Act. It will provide $5 billion over 5 years for research of the NIH into the understanding of pain and the discovery and development of therapy for chronic pain.

Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Withdrawals From Actiq…..3 Weeks Later….For CRPS/Systemic


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“Why give up everything for one thing when you can give up one thing for everything”……Unknown

Hello Luvs,

Wow…it has now been 3 weeks (*tomorrow….On Monday, Aug 3, 2015), since I went  from 5 Fentanyl “Actiq” Lollipops per day (Plus the long lasting Fentanyl patch that I still continue to wear and to change every 48 hours), to zero Actiq lollipops for Breakthrough pain per day. I went to bed on the 12th of July taking my last “sucker” for pain and I woke up being unable, not allowed  to take another. The first day wasn’t as bad as I thought it would be. I am suspecting that was because I still had residuals left in my system.  By the end of the first night, I started feeling pretty ill. The second day was wasn’t so bad and the 3,4th, and 5th days were the worst.  I can tell you that it feels like the very worst flu that I’ve ever had. It includes: vomiting, diarrhea, chills, awful sweats and all I wanted to do was lay on my couch, bed or “Lazy Boy” chair. I am sometimes hungry, but when I eat, my stomach hurts. I feel bloated and nothing sounds good to eat and even drinking doesn’t sound good. I used to love my hot tea, my coffee and diet pepsi and none of that even sounds good to me now.  Nothing is the same and now it’s been 3 weeks!

We called the Dr. about 5 days into this and told him how awful I’d been feeling. I did a lot of research, went onto forums for withdrawals and such. I found out that there are a few different meds that can help through the hardest days at the beginning especially. The first one is a blood pressure medication called “Catapres” also called “Clonodine”. There is an anti-anxiey /anti-panic attack type of drug called “Klonopin” that can also help with the withdrawal and flu-like symptoms. Then another thing that can help are the medications that are for anxiety, such as: Ativan, Xanax or even Valium. You don’t need to take them for a long time but just long enough to help you through a hard time. If you find yourself in this kind of situation, please research online forums, use “google” to look up information on withdrawals and then check out “You Tube” videos online about withdrawals too!  My Dr. gave me the Catapress and I took it for about 2 weeks and it helped very much with the symptoms of chills, sweats etc. That is driving me crazy! The chills and sweats are getting lesser and less often but the knee dropping fatigue just won’t stop!

So now I’m actually finishing the 3rd week of not taking the one thing that actually worked for my pain.  The Fentanyl Lollipops helped me and though I never should’ve been given the large amount that Dr. Bullach had given me, I felt so much better when I was down and got myself down to the FDA approved amount. I don’t understand  at all why I have to go through the pain of the withdrawals from something that helped my pain the most and did not upset my GI tract. I now remember and cannot believe that I didn’t remember when the pain Dr. asked me “do you have stomach issues? Why are you taking the lollipops in the first place?” I told him that I didn’t have issues with my stomach and due to my MTBI I forget certain things. I remember now that Dr. Bullach had written a “book” for the Insurance company about me and why I needed to take Actiq losenges or lollipops because of the numerous different meds that I tried with horrible GI side effects or allergic reactions. I had forgotten all about that until I started taking Dilauded on a daily basis. It’s ripping up my stomach!

It’s been 3 weeks and I cry often and feel very depressed. I’m not ever very hungry and I’ve not lost any weight! How crazy is that? I feel nauseous and my stomach down in my lower intestines, feels bloated and hurts every time I eat something! Nothing sounds good and nothing much tastes very good. I’m going to the pain Dr. this week and I need to talk to him and tell him everything. But I just really don’t want to try a bunch of other medications that might make my stomach worse or have even worse side effects. The one side effect that I cannot handle is “weight gain”. I already feel much to heavy now and I cannot afford to gain an ounce. I used to have Anorexia since I was about 13 yrs old and I fought in on and off until I was in that car accident . I will only say one thing about the eating disorder, and that happened because of things ….no….”Abuse” that happened in my home growing up. My kidneys and tubules from my kidneys are too small according to the Ultrasound that the Nephrologist did several years ago following my episode of acute renal failure in 1994. I’ve been on SSDI for Chronic Kidney Disease Stage II and Complex PTSD. To make a very long story, very very short, my heart and my kidneys have medical issues due to me being starved and poisoned with syrup of Ipecac during my childhood. I have seen my pediatrician records, shot records etc.; my dad gave them to me after my mom died and I don’t think he knew what they said!  They are written all over by the pediatrician. It says “Feed this baby”!  “This baby is Anemic! Give her Iron”….then the Dr. wrote some instructions with names of baby foods and formulas with iron etc. So ….lastly, regarding this subject, I do have stomach issues and when I was terribly Anemic in 1999, 2000, 2001; I had 3 blood transfusions!!! They didn’t work and the Hemoglobin was at 8. when I had the last one! So I visited a Hematologist and he gave me an IV infusion of something that helped and my Anemia has been much better since 2002!!!

Since that awful car accident on 8-11-02, and all of the chronic intractable pain, the surgeries and the horrible pain following the surgeries; I just didn’t care anymore about how much I weighed. The numbers didn’t matter any longer! I needed to eat to help myself feel less pain, take medications to help with the ongoing pain following that accident.!!! I slowly started gaining weight as at the time of the MVA, I only weighed about 90 pounds and I am 5’5” tall! Slowly I allowed myself the nourishment to “fix” or help “fix” my pained and broken body. I’ve gotten up to about 145 lbs now and to me, that is too much. For a long time I didn’t weigh myself because as long as I could wear a size 6, I felt OK with myself. I can still wear a “misses” size 6 in relaxed jeans but I feel very big now because I need to use a cane, a wheelchair at times and even a walker. I don’t exercise because I get out of breath and in too much pain and am unable to do much of anything. The CRPS started in 2007 in my right foot following a surgery. It spread to both feet and my knees as well. Now it is full body  “systemic” and I cannot even walk more than just a few minutes, like 20 minutes I suppose. Some days a little more and other days a little less. I’m trying not to worry about that, the “numbers” game, but it’s really scaring me because for the past 3 weeks now, I’ve had a very hard time eating anything much at all and I have not lost but 3 pounds. My Lymphedema in my left arm from the CRPS on my whole left side internally, doesn’t help with that because I get a lot of edema! My feet, legs and arms swell. I’m pretty much miserable!

I didn’t mean to go there. I wasn’t planning on talking about the Anorexia. But I am proud of myself for a few reasons. I have cured myself of the Anorexia (although I will always have the food fears and I will always have the distorted body image and thoughts that go with it all. But I will not ever be acting on those fears and thoughts again, for life and death reasons because I love my husband, kids and grandkids much more than I care about those numbers! I always did but I felt too “out of control” and controlled by my fears of food way back when!

Ok…..so back to these past few weeks…..this has been the hardest or one of the top few hardest things that I’ve ever done. I asked the Dr. who took over for Dr. Bullach,(**and got me through by prescribing lower and lower doses of the meds that would’ve and could’ve killed me if he had not done that for me) if he was “proud of me” for stopping the Fentanyl lollipops?  I asked him also if he liked the letter that I wrote to him, Dr. Bullach and Dr. Dobritt, the old pain Dr.?  He smiled and said that his Office employees were impressed and he left it at that. I could see it in his face and his eyes. His demeanor was very different this past visit, with my being off of that prescription now  and him not having to write it for me any longer. He is relieved and I do feel that he is very happy for me and proud of me. That shouldn’t really matter to me but it does make me feel good that I did and am doing and have done something very very difficult that even some of the strongest willed people might not have been able to do!! But I’ve done it and i’m doing it!!

After having said all that I’ve said, now I’d like to really say that I’ve been going through “HELL” this past 3 weeks. I don’t want to live like this with my stomach feeling all ripped up. My headaches and neck aches, which are in the back of my head and neck, most likely from the “Chiari I malformation”, have been a daily occurrence and they aren’t going away! I was off of  my Ativan for a year and now I’m back on that several time daily to help with the Dilauded side effects.  I could take the Dilauded when it was just an “emergency” medication that I used to keep out of the E.R. or it was used following surgeries. You must remember that I also had my “suckers” at that or during those times as well. My husband has had to set his alarm for 6:00 am each morning to get up and get me a Dilauded and an Ativan , just so that I am able to get out of bed an hour or two later! I used to take a Fentanyl Lollipop which was waiting in my bedside table drawer. I could open it, take it and lay in bed for about 1/2 hour and then I was able to get up. Now I have to plan it like a 2 hour ordeal. If we forget then we or I cannot even get out of bed. I do have GI issues obviously from all that my stomach has been through. Im actually surprised its not worse. I do have to have Colonoscopies every 5 years also, because of my mom’s death from colon cancer in Dec 2002. For some reason, the lollipops don’t upset my stomach or bother me in any way. I have had no side effects! I’ve honestly tried so many other pain meds that all had terrible side effects and worse! I don’t think I’ll be able to go back on the lollipops now! I’m not sure I would if I could, now that I’ve gone through the withdrawals and illness that goes with that.!! I honestly don’t know what to ask for or try? I did have something called Kadian (*extended slow release Morphine) that worked for a few or 2 years and suddenly stopped working for me. I also have something called “LONG QT syndrome”, which affects my heart and there are hundreds of meds that I cannot have due to this condition, that has only one symptom; which is “sudden cardiac death”.

Now I’m going to share with you, some research that I got from some of the websites that are the companies that make these Fentanyl lollipops called “Actiq”. I also want to share that many people have lost and do lose their teeth because of these lollipops with 8 grams of sugar in each one. The way that you get the medication to work is by placing the lollipop between my gum and my cheek. You have to pretty much keep it there twirling it loosly for 15 minutes in order to get the appropriate amount of medication. My Dentist was wonderful and thought ahead for my safety and comfort. He made special trays that molded to my teeth. I then put a flouride paste into these trays, put them into my mouth, covering all of my teeth for about 5 minutes several times per week! I had only one or two cavities since 2005, when I actually started the suckers. They were very old and needed new fillings. I tried hard to take every precaution.

I honestly don’t see why I had to have something taken from me that I was being very responsible with and doing very well with while taking them??? I only always followed my physician’s rules and advice! These past 3 years I had asked him several times if he would “help me go down off of them and take less”. He always told me that “Suzanne, I got you out of that hospital bed in the living room! I got you to be able to get up, go out sometimes and have a bit more of a life!” He was right, so I stopped bothering him. He told me to “trust him” and so I did. Here are a few of the things that I found on the website for the Fentanyl “Actiq” Lolllipops for BT pain:   “Actiq achieved off-label status as a powerful pain reliever (80-100 times more potent than morphine) and is used to treat migraine headaches, severe back pain, cluster headaches, bone pain, arthritis, neuropathies, and other situations of severe chronic non-cancer pain.”  Also, I read that “It can legally be prescribed for off-label used but cannot be marked as such.  As much as 80% of the prescriptions for Actiq each year are written for off-label use for sufferers of NON-CANCER,Chronic pain.  Soooo, then ….if I was doing so much better and had a much more happy existence with less pain because no stomach issues and honestly …less pain!!??? Why , then??? Why can I not have my life back? Its not any more dangerous it just cannot be! I don’t  understand because Fentanyl is Fentanyl and how is less of that any better for me, than Dillauded ripping up my stomach whilst my head and neck,…..arms, legs and feet feel “on Fire” along with burning nerve pain! I’m so fatigued, that I can only do something for about one hour maybe two and I’m down for the count! The rest of the day is in bed or in my “Lazy Boy” chair or on the couch!…

Well, I’ll give Dr Bullach that one…he got me “out of that hospital bed in the living room and out doing more stuff” while in the meantime giving me much too much medication …..like I have said before, I’m a lay person and I had no idea !! I wish I’d never taken any of it….I ‘ve never smoked, drank nor have I ever done any drug of any kind…At first, after the car accident, when I went to my 1st pain Dr  for 3 yrs…they’d get upset with me because I wasn’t taking the amount prescribed but was taking LESS….I cannot win….I never have taken more than prescribed either….well, we will see what happens huh? I’ll keep you posted…I have another pain Dr. appt this week on the 6th….Thank you for following ….and we will be on to a new subject very soon…If you want to read back on any of my old posts…one of the pretty good ones is “Illness Doesn’t Equal Lack of Faith”…..it’s a good one if I do say so myself….check it out if you wish….I’ll be writing soon again…not so long this time…My youngest daughter is moving with her hubby to Boise Idaho this week…give me strength. This is going to be so very hard…I miss her already….UGGH Why does life have to be this hard??? lots of love, Suzanne

Symptoms-Opiate-Withdrawal-300x159fentanyl_ParPharmaps-hopeActiq

Withdrawals And One Week Fentanyl Lollipop Free !!


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Hello Luvs,

Wow…One week has passed….and I have been free of the Fentanyl Lollipops for 7 days now!

I would say that growing up in an abusive home was horrendous. Being robbed at gunpoint at the age of 11 years; in a shoe store with my family, was just terrifying. I also think that  getting married, being abused and getting remarried all the while being abused even worse, was pretty challenging. I didn’t know what “challenging” was though, until I had to flee the marital home with my two baby girls; along with help from the domestic violence shelters. My little girls  were only 3 and 5 1/2 and I was 30 years old. Later I was diagnosed with PTSD and “Battered Woman’s Syndrome” and found some solace in trusted Psychologist whom I still know to this day. I had felt that battling Anorexia & depression on and off since the age of 17 until I cured myself following a horrible motor vehicle accident in 2002; was brave and courageous. Having gone through Acute renal failure, being robbed again in 2013 and being involved in 2 Motor vehicle accidents, through no fault of my own, I thought I didn’t exactly have such an “easy” life. The second MVA in 2002, I suffered numerous injuries and multiple surgeries; including several pieces of hardware placed in a few different parts of my body. I’m on my second pacemaker, the first being “a piece of cake”. Meaning that the second pacemaker surgery in 2013, did not go quite as planned. After getting into my chest, the Neuro-Cardiologist found out that the 1st pacemaker had worn a hole right through my pectoral muscle. Then not only did I need a new pacemaker, but the 45 minute to an hour surgery turned into a 3 hour ordeal in which my whole left pectoral muscle had to be rebuilt. The team was smart and did research on RSD/CRPS, a Neuro-autoimmune disease that I ended up getting after my 7th surgery.  It was the surgery on my right foot in 2007, in which the horribly painful nerve disease started. It spread and it spread until it went systemic following that major open surgery in 2013. I even endured a CVA and a mild heart attack in between the 10 surgeries following that MVA in 2002. I suffer from an MTBI (mild traumatic brain injury) and went through 3 years of TBI rehabilitation to learn how to cope with:  not being able to cook when nobody is home (because I may leave burners on and hurt my family or myself), not being able to comprehend what I read anymore after having been a College graduate with a 3.9 GPA! I had to learn how to live with leg braces, hearing aids, special prism glasses, balance issues, much less concentration capabilities and just about zero short term memory!  The worst of these being the chronic nerve pain and all of the pain following those years and still to this day.

I went to a pain Dr. for 3 years and he did everything from epidural nerve blocks to trigger point injections and biofeedback along with pain Psychology appointments. I was so happy when I read the notes from the pain Psychologist’s because they wrote that I was not an “addictive personality”. I never drank, smoked, did any drugs….prescription or otherwise! I was one of those “good girls” who had always tried to be “teachers pet” and get a 4.0 GPA and still try to get “extra credit”. Of course I’m a “type A” personality person who likes to do things the right way the first time if at all possible. I always did my best at everything I endeavored. I made alot of mistakes but always came back and tried again, while pulling up myself by the “bootstraps”.

The chronic intractable pain that has gone along with all of my injuries and surgeries since 2002 and then the diagnosis of CRPS in 2007; and later the shock of getting the “full body/systemic CRPS” has been traumatic to say the least. I was always very cooperative and followed whatever the Dr’s told me to do. I trusted again and again and again; when most people would’ve given up long ago, I just kept believing in the “goodness” of people or at least trying to find some good in all people. If you’ve been following along at all, you’ll know that I met Dr. Bullach, my GP for 12 years, in 2002 during a hospital stay following that MVA.  I was in there for pain control and met the pain Dr at the same time. I trusted him right away and thought he was a kind and “teddy bear-ish” type of personality.  He told me that I “could trust him” and that “he would be the eye in the middle of my storm”. He said he would help me and cooridinate specialists and take care of all of my medications etc. He told me “not to worry”.  We tried every medication under the sun, it seemed.  Everything either made me deathly ill, very sick or I was allergic to it! By the time we were finished and had found one thing that finally worked for my kind of pain, there was something of a “book” of all the meds that I had tried and which had failed for me.

Finally, I tried the Fentanyl patches and they made me nauseous and really “loopy”. I went ahead and tried them again because I just felt that a patch was so easy and you didn’t have to think about it all the time, many times per day etc. It finally helped to relieve my pain. I had a hospital bed in my home because I couldn’t even get in and out of bed or get any sleep due to the amount of pain I was living with at the time. I had been offered a “pain pump” that they fill with morphine, by the pain Dr. ….but the auto insurance was fighting me so much and I just didn’t have a whole lot of “fight” left at that time. I also already had 2 screws in my right shoulder, a jaw implant and had a pacemaker! I didn’t want anymore “things” put into my body. Especially not something with a catheter that would’ve been stuck into my spine that had multiple herniates and bulging disks, degenerative disk disease and Scoliosis.  Luckily I didn’t get the pain pump because later we found out that I suffer from Hypogammaglobulinemia, a blood disease that means I have an immune deficiency in my IGG, IGA subsets of white blood cells. I could have become paralyzed and could have gotten numerous infections had I allowed that pump to be placed. I made the right decision for me and today I’m so glad that I did.

So I had been in a “pain pump” support group, just to find out information for myself about the pumps and to make friends with the same kind of pain issues that I suffer from. Everyone was so kind and many were knowledgeable. Some of the people mentioned these “pain lollipops”. They said that they helped a lot and very quickly for the terrible nerve pain. I checked in with my GP, Dr. Bullach about them and he started me on them right away. That was in 2005, after I’d finished treatment with the pain Dr.and he’d put me back in the hands of my GP.  He told me that because I didn’t want a pain pump and I was going to go the medication route for my pain, that it’d be better for me to be in the care of my GP. He agreed that Dr. Bullach would prescribe the pain meds. He told me that my Dr. could consult with him at any time and he would help.  He also agreed that it was better for him this way because he was “looked at under a microscope” and didn’t like prescribing pain meds.

These experiences were all difficult, painful, scarey and life altering; but nothing prepared me for what I’ve gone through this past week with the withdrawals from the Fentanyl lollipops.  I’d been prescribed them and had been taking these for the past 10 or 11 years! Time just kept passing and the regimen was working; although I asked many many times over especially the past 3 years to get taken “way down” from the amount I’d been taking of the pain suckers. Dr. Bullach just kept on telling me to “trust him” and that he “was the eye in the middle of my storm”.  He told me that he’d “gotten me out of that hospital bed in my home”!  He reminded me that I was able to at least get out and do a little bit more than I had been before the lollipops. So I trusted him; though I still continued to ask him to slowly take me down because I felt that I was falling so often (6 times in 2014 and 6 concussions!!!) and though I have balance issues, I thought in the back of my head that maybe it was partially the fault of the meds? I never even took an Aspirin for headaches in the past, prior to this car accident and the injuries from it. Now I was wearing 2 patches of Fentanyl and taking sometimes approximately up to 20 or + lollipops daily to control my CRPS and the other pain issues. I had even woken a “sleeping monster” in that MVA in 2002! I had been born with “Arnold Chiari I malformation”. It showed up on the MRI after the MVA. It is a congenital defect in which the tonsils at the base of my brain stem get swollen and do not fit correctly into the spinal cord column, causing great pain for some people and others never know they have it! It all depends on many issues and variations. The horrible whiplash being my 2nd one and then the MTBI, “woke up” the sleeping congenital defect. Hence, another horrible pain issue to where I cannot even hold my head up for long periods of time without causing great pain.

So as you’ve probably been reading my past few posts, you know that my GP just abruptly left in December 2014. Without any feeling, caring or the tenderness I’d seen before in his eyes; he just told me he was leaving and that that appointment would be my last one with him. He promised he’d talk to the pain Dr. that knew me. He assured me that my treatment would be and stay the same as it had been because it was working! He promised also to send my records to the pain Dr and to personally talk to him on my behalf. I had received a letter from my health insurance company, stating that they “would no longer pay for the Fentanyl lollipops for pain after March 11, 2015, unless a pain Dr. agreed with Dr. Bullach’s treatment plan.” He told me not to worry about a thing and again to “trust him”. Well, as you know, none of that ever happened and the Dr. who took over for Dr. Bullach’s patients got left with a “mess”. He could not handle the volume of patients on top of his own, especially the amount of “pain patients” that Dr. B. had accumulated!! Luckily for me, I’d been a patient in that office since 1986, and had a history with that other Dr. as well. He reluctantly helped me get the pain lollipops and patches, but was swift to inform me that he was not going to be prescribing the amount that I’d been taking under the other Dr.

I was afraid, but I was motivated. I have been through so much, but it has made me a strong woman and a survivor. I took myself down from 20+ suckers daily down to only 8 in just a couple of months time. I cut my amount of the patches in half as well. I went through some hyperalgesia and some misery, but I did it! I was taking less and less as I was looking for a pain Dr. to help because the other physician in that practice didn’t feel comfortable prescribing the kind of pain meds that I needed to survive now, with all of the pain that I live with on a daily basis.

Finally, I found a nice pain Dr. and luckily I carry my records with me when I go to a new specialist. I had everything in order and I felt “safe” with him right away. He told me to finish up the pack of pain lollipops that I was taking and then  go to sleep on July 12th taking one last sucker. Then I was to wake up on the 13th of July, and never take another Fentanyl lollipop again; after 10 or 11 years of taking them, it was over! I was starting a new pain management regimen and I was fearful, but knew I could do it!  The first day was not so bad until the night time. I did crave the mental picture of having something that my brain associated with immediate pain relief!  I felt nauseous, achy all over and I was so hot, I thought I was going to spontaneously combust!! Then I’d get chills, diarrhea and started to vomit. I felt jittery and anxious and didn’t want to do anything but cry and sleep and lay on the couch! I made a video of how I was feeling at 5:00am on the 2nd day. The second day was more of the same and the third day was the worst! I did manage to go with my husband, daughter,& my 2 granddaughters to an hour or so of the kids “music in the park Wednesdays” Summer program.on the third day.  I returned home sicker than ever afterwards!  Finally, I started researching on forums and “You Tube” etc. I learned that if I took a medication called “Clonadine” aka “Catapress”, it can sometimes help with the withdrawals. I called the GP and within an hour an half, I had the Catapress in my body. It was the first thing that actually took a little bit of the edge off from the withdrawal symptoms.

The pain Dr. didn’t seem to think I’d have too much or too many symptoms because he said we were “faking out my body” by switching to a different BT pain medication….something  more safe and not made for “end of life” and “terminal” patients.with Cancer.  He told me that the pain lollipops were/are dangerous, “very dangerous”. He said that I should never have had them. So I’m not sure why my body still went through horrible withdrawals, maybe because of my many bad pain issues?  But I felt like I just was going to die and really didn’t care if I had, at that point! I’m so lucky that my husband is a teacher and he was home for me. Also, my oldest daughter lives nearby and she was a great help and has been. She even was calling several times daily and was stopping over to bring me some “Gator aide” to help my electrolytes along with my favorite food, “french fries”, to get me to eat something substantial!

Well, today it is one week and I am Fentanyl lollipop free. I’m very proud of myself for doing this without having to go anyplace and get help elsewhere. I was afraid because I had a previous heart attack and stroke and I’d had seizures following the MVA for about 6 months. All of those things can happen when going through withdrawals. I’m so very lucky that these things didn’t happen again. I don’t feel good yet. I feel very tired, heavy and I still have stomach aches and diarrhea, along with nausea and depression on and off. I think I’m over the “hump” or the worst of it. I think I will get just a little bit better each day. It’s going to be very very hard because for over 10 years I had a “quick” relief when I was on an outing or needed quick breakthrough pain relief.I have to retrain my brain and myself to just plan ahead and take what the pain Dr has prescribed for me now, about 45 minutes before I may need it. That’s not going to be easy and the new meds are feeling like they’re ripping out my tummy. People tell me that is the withdrawals and not the meds. I’m willing to see this through and keep on keeping on!

Thank you for allowing me to share my journey with you and I will certainly be keeping you posted. Thank you again…..Also, if you would like to watch my very dark (because it was middle of the night with no lights on and I was crying very much) “You Tube” videos, please email me for the link and I will give it to you. I have them not ‘private” but “unlisted” …so if you have the link from me, you will be able to watch them. There are three videos altogether right now for this experience thus far. Again, my email is: jewelrymkr@aol.com…..g’nite luvs….

willsTrue Colors:  Seeing Is Believing.....sins