I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!
**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN, FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016
***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”
People With Pain Matter! This Video is about my Chronic pain, CRPS Story & other Info. As well! A plea re: Opioids and correct information regarding subject also! #peoplewithpainmatter #painedlivesmatter #KeephopealiveforCRPS ….Opioids don’t kill people!~ People Kill themselves when they take Opioids with alchohol and illicit drugs like Heroin. Pain Patients control their medications and not the other way around as in drug addicts. Statistics prove that most overdose deaths are not reported correctly to the public. Chronic pain patients are “lumped together” with drug addicts and we are NOT!
*WRITE FOR YOUR RIGHTS!
*TIME IS RUNNING OUT….YOU HAVE ONLY UNTIL JANUARY 13TH, 2016!
I hope this finds you in better or the same shape after the holidays that have just passed us by once again? None of us wants to go backwards, right? If we do happen to tip backwards a little bit or even quite a bit; we must dust ourselves off and get right back at it again! The holidays tend to wear out people in the best of health, let alone, those of us in pain andor with declining health.
This is a very important blog post because I have a few things to tell you, teach you and to remind you about. First of all, I wanted to share with you that I was most humbled when I was made aware that there was an article written about me in “RSD Angel Express Newsletter” about the end of December, 2015..just recently. I will post the article in its entirety for you here after this paragraph. I was surprised, proud, excited and most of all very humbled by the whole experience. Humbled, because this means that I must continue, not ever give up and do what I have been doing for Pain patient advocacy.
I think the most honorable, humbling words in the entire article, that actually made me feel so very elated and proud, was where the author, Flora, wrote this “She doesn’t expect anyone to feel sorry for her, because she’s a mountain that won’t just fall over”. That just made me happy because I don’t like to have a fuss made over me. I don’t like the spotlight, unless I’m signing (doing ASL cover songs) a song! I want to be strong and continue on helping and doing and making changes that are good for all of us. That is what makes me happiest aside from spending time with my husband and my family.
PLEASE READ RE: FUNDRAISERS FOR RSDSA AND RSDHOPE:
So that was the item that I wanted to share with you and now I have a few other things on my agenda for this post. One thing that I wanted to let you know about, inform you of; is that I have 2 (two) fundraisers going right now, to raise money for people with this horribly painful disease that I have, and about 400,000 others in the USA also struggle with: CRPS or known as “Complex Regional Pain Syndrome”. You can get a lot of information about this disease at a couple of my favorite places: WWW.RSDS.ORG and my other favorite is WWW.RSDHOPE.ORG. Both are a large powerhouse of information. They both help new patients, old patients and anyone needing kindness, information and/or advice. RSDHOPE concentrates largely on spreading awareness and information. That is their main goal and target. Keith always says that “the money for research and other ways to help us, will find its way to them at just the time it is needed.” RSDS is also full of help and education for the patients. Jim Broatch, who is the “father-type” of person, who is very very helpful and kind as well; is pretty much in charge over there (*he is executive VP and Director) at RSDS. They concentrate on the here and now. They want to help people who need help by having #1, a scholarship program. It is where people who need a certain expensive test and their insurance won’t pay for it, or they need some kind of medication or treatment and they are unable to pay, they can put in to ask for this scholarship and fill out some forms. Then if it is approved by a board of persons who oversee that, then they send the money to the people to help out. The other thing that I find pretty darned nice, is that they have this “Penny the pig” little orange piggy bank that they will send to anyone who asks, and you fill it up with your pocket change and send it back, or send back the money to them and maybe even fill up the “pig” again? What it does, or what they do with the money from the piggy bank is they put it all together and send kids with CRPS to camp in the Summer! Isn’t that awesome? They are both pretty special groups, run by pretty special people. RSDHOPE has a “Mentor” program, of which I am a part. When someone is newly diagnosed with CRPS, they will assign a Mentor; someone who has had CRPS for a longer time period, and the Mentor will talk to the “newbie” and help however they can whether it be a chat, an email or a smile that they need. So about my 2 fundraisers that will be going until beginning of Summer in 2016, the links to get to them both are going to follow this paragraph. You can choose which of the two big National and well known organizations to help! It is totally up to you and you will go here to donate to RSDHOPE.org (any amount will do…please? Really anything is going to be helpful : *click here> Fundraiser for RSDHOPE & money goes to all aspects of helping *(www.firstgiving.com/fundraiser/Suzanne-stewart/CRPSfundraiser **this one is for RSDHOPE.org) and the 2nd one is for RSDSA.com, and it is here: (www.firstgiving.com/fundraiser/Suzanne-stewart/RSDSAinmemoryoffriends). *click here> Fundraiser for RSDSA & in memory of friends we’ve lost to this illness ….now I’ve given you the direct link or you can click on the blue URL link and it will take you directly to the website! If you can give anything, that would be so great and so very awesome! If you cannot donate, maybe you could use your : webpage, Blogs, Twitter, and/or any other social media to SHARE these fundraisers and help out in that way?
INFORMATION RE: THE CDC & THEIR VIEWS ON OPIOIDS; HOW TO GET YOUR LETTER TO THEM & WHAT YOU CAN WRITE: *good information please read if you take Opioids, plan to take them or if someone you love is taking them!!
The last but most pressing matter that I wanted to speak with you about is of utmost importance!!! I saved it for last so it would stick in your mind and you would really do this for yourself, for everyone in chronic pain and for the freedom we should enjoy living in the USA! The list of people that this will help, even includes our service men and women who get hurt and then must live in chronic pain for the rest of their lives, just as those of us with our several different chronic pain diseases; be it RSD/CRPS, Neuropathy, Diabetic Neuropathy, Degenerative Disc Disease, EDS, Chiari Malformation and the list is endless. So this is what it is my friends, ***WE HAVE ONLY 8 days left to do this task and please, could everyone who is reading this please do this small favor your friends, family and even yourselves; whether you are in pain or not, we need your HELP??
The CDC was going pretty much “behind closed doors” and they got a group of people who don’t have our best interests at heart, but more in their wallets. This group of people decided that “too many people were dying from what they call “Opioid abuse” (even though they wouldn’t be stopping the culprits, the so called “addicts” or the illegal “pill sellers and pill poppers” ) they want to STOP allowing those of us living with chronic pain to have access to Opioid pain medication. They believe we should try things like: diet, exercise, Psychiatry, Nutrionists, Acupuncture, massage, biofeedback and their “treatments centers”! YES, I did put “their” treatments centers in there. It was not a mistake ! You see, the health advocates and others found out that this group of people who the CDC got to make this very important decision could hurt and has the potential to “kill” people living with daily chronic pain!! They could do this by taking away all access to Opioids for “all non malignant pain and allow it only for cases of malignant pain”! Well, after a snap decision was made by this group of random people (and not including any chronic pain patients themselves), a decision that was made in secret and behind closed doors in a quick manner, to stop the prescribing of Opioids for any chronic pain patients. This means that the woman (similar to me) who has been on them at a bit of a higher dose for the length of 15 + years, could die because the next time she takes her script to the pharmacy, they could and will deny her the medicine her body has become tolerant or dependent on. She is not an “ADDICT”! The percentage of people with chronic pain issues who actually become addicts is very very low, at only about 5%! This woman could die! Or the man who has served our country and lost his limb; and he has “phantom limb pain”, could commit suicide because he will now have no access to his pain meds, that were maybe prescribed to him by his GP, due to money problems? Maybe he cannot afford to go to a specialist? These are hypothetical situations and let’s hope this never happens!
We don’t want this to happen! I just cannot believe that they did this with a group of people who could and will benefit from our lack of real care. We found out that several of the people that made the snap decision to “start this war against the chronic pain patients” stood to gain from our loss of life and/or quality of life! Some of them owned treatment centers, acupuncture clinics, & massage studio’s!! Some others were to gain from the use of more Spinal cord Stimulators & Pain Pumps. It’s ludicrous that they have our lives on the line so that they could make a few pennies! It is awful to think that Dr.’s could be forcing people to have surgery, sometimes very risky surgery to their spine; because they will be unable to take a “pill” for their chronic pain!! Well, not really “unable” but not allowed by law!
So this is what we need to do! Please write to your Governors, your state representatives and tell them what is happening! But first, please write to the CDC BEFORE JAN 13th! On the 13th of January at midnight, the CDC will stop taking our comments about this. I will put all of the information at the end of this writing. But you need to tell them in your own words, what is wrong with you or what your chronic pain is all about! Tell them what you used to do for work and what you can and cannot do now due to pain. Tell them in your words what this would mean to you if they took your medications away from you ! Something that has possibly been helping you for years and then suddenly you could not get it What would happen to you Be passionate but direct. Do not be nasty or degrading and do not use cuss words please. Be. Classy & truthful but plead your/our cause! Write your letter in Word and make sure you have word count on because you are allowed only 5,000 characters! Please make sure that you write at the top of your plea, the “DOCKET # which is: CDC-2015-0112-0001”.
Go to this website for the CDC: you can copy and paste right from Word if you would like, or you can write directly in the box for comments on the website because it also has a count for words on it. It lets you know when you are getting close to the 5,000 limit. Remember to tell them what you used to do, what you can do now and how the medications help you. Make sure you add if /where you volunteer or if you are doing so online or in a place outside of your home. Some diseases are not recognized by the CDC, and one of those is CRPS/RSD. If you have this, then please discuss the McGill pain scale and how CRPS is at 43 on this national pain scale! I would tell them that the Federal Government recognizes CRPS/RSD as a “Disability” by SSDI standards now days! You may want to list the National Institute of Healths’ definition for your illness. For CRPS/RSD, that is this:
“Complex regional pain syndrome “CRPS”is a chronic pain condition most often affecting one of the limbs, usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to or malfunction of , the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area.
There are two similar forms, called CRPS-1 and CRPS-2, with the same symptoms and treatments. CRPS-II (previously called Causalgia) is the term used for patients with confirmed nerve injuries. Individuals without confirmed nerve injury are classified as having CRPS-1 (previously called Reflex Sympathetic Dystrophy Syndrome) . Some research has identified evidence of nerve injury in CRPS-1, so the validity of the two different forms is being investigated.
CRPS symptoms vary in severity and duration. Studies of the incidence and prevalence of the disease show that most cases are mild and individuals recover gradually with time. In more severe cases, individuals may not recover and may have long term disability.”
OK, so now that I’ve given you the tools, please go to this CDC website and start writing to help your cause and our cause and the cause! Don’t forget, if you are not suffering, maybe someone you love is suffering! Do this for them, please! Go to:*Click here >> The CDC Guidelines “OPEN COMMENTS” page <<…write your comments and please do NOT forget to add the Docket # at the top of your comments or they won’t accept it! Again, the Docket # is: DOCKET #CDC-2015-0112. …if you are someone or know someone who needs to write to the CDC to help this Cause, because you do not have a computer, then you can write your comments to: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention….DOCKET #CDC – 2015 -0112……. 4770 Buford Highway N.E., Mail stop F-63, Atlanta, GA. 30341
I hope you will do this for yourself, for someone that you love who is too sick to do this for themselves!!! I pray that we will be able to be a force to be reckoned with! Let them know in a strong but kind enough way that we will not sit idly by and let our lives go to dust! I am a grandmother of 2 and one more on the way in June ’16. I’m a wife for almost 20 years and I want to live! Chronic pain can kill you if it is not put under control. It can cause a ripple effect of more medical issues! There will be more suicides and deaths if they succeed in what they are trying to do to us. I cannot even believe that we are at an issue over taking a pill for pain. Something that was developed many years ago and found to be helpful for people living with chronic daily pain! There’s a huge difference between a chronic pain patient and a drug addict! So let’s show them that we will stick together and help ourselves and each other!
Much of the statistical information was found at the Pain News Network and their daily columns. There were other information sources that were found on the Internet and at a Facebook CDC info page ( at: https://www.facebook.com/events/1099948746690760), also I got some info from the National Pain Report newsletters. The NIH definitions etc were found at the NIH website. *Some of the above is my own personal opinion and I am not a medical personnel; but I have been a health advocate for 12 years now, since 2007.
I would like to share one more thing with you. The CDC was ready to implement these limitations on us, until. They were threatened with a lawsuit. The Dr’s who were on the panel which decided that pain patients could no longer have the medications that we need, are called “PROP” or Physicians for Responsible Opioid Prescribing (they are not for the Responsible prescribing of Opioids, in my opinion. They are “AGAINST” THE PRESCRIBING OF ANY OPIOIDS FOR ANY KIND OF NON-MALIGNANT PAIN!).
**LASTLY, DID YOU KNOW THAT A FEDERAL SPENDING BILL REQUIRES THE VETERANS ADMINISTRATION TO ADOPT THE CDC’S OPIOID GUIDELINES BEFORE THEY ARE EVEN FINALIZED!!!!! OUR POOR INJURED VETS WHO HAVE SERVED OUR COUNTRY AND HAVE BECOME CHRONIC PAIN PATIENTS, WILL NOW HAVE NO WAY TO ACCESS THE OPIOID MEDS. THEY HAVE BEEN HAVING TROUBLE RIGHT ALONG! MY OPINION….SO SO NOT RIGHT, NOT FAIR!! (Info from PainNewsNetwork.org)
I wrote a week ago, a response from my heart; regarding the new CDC prescribing guidelines for …but actually “against” Opioids. Here is my shortened version: “From The Heart, About The War Against True Chronic Pain Sufferers!!”
Remember the “War” against carrying a gun? The “bad guys” will always have access & “good guys” die because their weapons are taken away! It’s happening now to pain patients! We are fighting against being “robbed” of the “weapons” we need to fight against the debilitating nerve pain, such as CRPS, that “WE” live with daily. I’m fighting the battle to live not “pain free”; but with less pain and more living!
Those in positions to help, need to take the time to do so! All 50 states now have Proclamations that explain the burning, “fire-like” pain of CRPS. They discuss Allodynia, or extreme sensitivity to touch; and the pain it brings.
But all of this means nothing if the Government, FDA,CDC, Physicians & Pharmacies take away the means of lessening our pain!
We follow the rules, sign contracts with our pain Dr’s & we have to jump through hoops to get what we need to try and live some kind of life.
The other side of the spectrum are those who don’t follow rules & who break laws! BUT they have a different disease called “addiction” and “they” ruin it for all of us. ( I read that only 5% of Opioid prescribed patients, are “addicted”)
Would these same agencies and officials take anti-depressants from the hopeless, or Insulin from a Diabetic?
“They” are trying to make us feel like criminals. Many of us have been through the rigors of the Auto claims adjusters, who have the power to take everything away with the swipe of a pen! It’s ruthless today for people living with chronic pain!
In 2016,conditions will continue to worsen unless we rally and try to do something about this travesty! This year the prescribing guidelines are getting worse. The Physicians are refusing to give medicine for pain when it is truly needed. Those who who are true “addicts” always find a way to get what they need! While law abiding citizens, suffering daily, have no means other than self advocating!
Remember we aren’t “addicts”! We are patients who are suffering daily with nerve pain and who’s bodies are “dependent” upon a medication that helps us live! Without proper pain control, after caring for daily basic needs, there’s nothing left.
It is despicable that some pain Dr’s now are being forced to “push” invasive surgeries on more patients than they would have in the past. Physicians who’ve pledged to “Do No Harm” will do surgery, instead of being scrutinized for prescribing the medicine so desperately needed for the REAL chronic pain population?
There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our GP’s and even tying the hands of our pain management Dr’s. The CDC, FDA, and other groups think that they know more about pain and pain management, when they have never studied such things? They are making it about a fake “war on prescription drugs”! This is some kind of smokescreen for saving money!
I say “Pick on the real criminals”, not the chronic pain sufferers! I feel uneasy & concerned. I went through an awful experience last year, when my Dr. of 12 years left unexpectedly! He left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me!
I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are the non medical personnel, these agencies, to say that malignant pain is worse than non malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the “McGill Pain scale”, right next to childbirth or amputation of a finger!
These lay people & agencies together are trying to say that exercise, healthy eating habits, along with PT and “behavioral therapy” are an alternative to medication for this kind of pain management! They say that the goal in all of this is to “stop the overdoses and the prescription drug abuse”. In all honesty, if the Dr. is a “good one”, he or she’ll only prescribe the amount needed. Why take it away if the patient & Dr. are doing everything right & when it gives some relief? The innocents should not suffer for the crimes of a few!
They’re saying that the pain meds stop working for everyone & that we all get “addicted”! We are all individuals whose bodies may become physically dependent but that’s very different from addiction.
Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and patients who live in the “Pain world”. They found that many of the people who put these new rules together have a monetary gain!.
One Physician wrote in the Pain Network News, that he has” had patients on higher doses of Opioids for over 20 years and they have some semblance of a life”. He even agrees that taking these meds from us and others like us, who’ve been on long term dosages and who will most likely have to stay on them for their lifetime; is cruel and inhumane treatment! He said that they are “forcing us into suffering, sickness and possibly even death!”
The “addiction specialists” tried to also scream “HYPERALGESIA” to everyone on Opioids for any length of time! If it is working and has been, then how can it be “Hyperalgesia”? If they really think that Hyperalgesia exists and is a problem with high or low dose Opioids, then this one Dr., who did not give his name, said that “we must remove all intrathecal Opioid pumps because these devices deliver a MEQ directly to the CNS receptors that is far in excess of any dosage we can achieve by peripheral administration.”(PNN)
Please use your voice and be heard! We need to form advocacy groups that will work together for the common good! Let’s stick together and not allow ourselves to be treated so inhumanely!
“Why give up everything for one thing when you can give up one thing for everything”……Unknown
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
Ten years I’ve been on those Fentanyl lollipops for Breakthrough pain. My GP, Dr. Peter Bullach, kept on telling me “TRUST ME’….”NO WORRIES, you’re out of that hospital bed and out doing a few things now”…..he’d say “Let me be the eye in the middle of your storm”….well that all went to HELL when he decided to get into some kind of trouble for writing too many prescriptions while the DEA decided they’d better check into him and they clearly did because now he’s working at an urgent care in Jackson, MI “Med Express” on NW ave. Except don’t go there if you want prescriptions because he’s unable to write them…yep..”THOSE” kind….not anymore…I’m so angry I could just spit. I’ve never hurt anyone, never will and never wanted to…I always just end up hurting myself….I just wish he hadn’t done this to me and now I’m just whining..
So it’s gone through now Day #4 and starting Day #5 and today I went to the Univ. of Toledo Medical Ctr. and saw the famous Dr. Blair Grubb and his Posse actually! I had my pacemaker checked and saw Dr Beverly but she felt badly but couldn’t do anything for me really?? She pretty much gave me a soft hug and sent me on my way and told me that I’d see the Dr next time in just a few months. Im upset because once again they have those new “patient online portals” and they have half of my information incorrect. UGGH What is wrong why cannot they get things straight?? I wonder how much was wrong when I didn’t even know about it? It made me angry and I want it fixed because I don’t like my information, my medical info wrong. I wrote a note and told them to please fix it!!
Today has been the worst day ever so far. I cried probably 90% OF THE day. I writhed on the couch and couldn’t concentrate on even my Iphone or computer or anything. I finally slept some when I convinced Craig to call my new GP and ask for Clonadine after I had read on a forum for people going through withdrawals from something online. It says if you can get it , it may help calm you down and help with pain. So I tried that also now and it did finally help me calm down to sleep on the couch awhile tonight. Also I did not take the Dilaudid because it just keeps making me sick to my stomach as if it’s going to explode along with my body which feels as though it is soooo much on fire that I’m surprised I haven’t spontaneously combusted yet!! UGhh…this isn’t going to be a long one because I can barely eek out this one at all. But I wanted people to know how I’m doing and it seems as though they want to know and are interested.
So today we went to Univ. of Toledo Med ctr. to see my Dysautonomia/POTS /Neuro-Cardiologist and they just saw me in my wheelchair with my blankets over me for pain and heat as I go between freezing cold and wanting to blow up from heat and feeling of being on fire!! So they couldnt do much….I had hoped that they would do more but they just didnt.
Therefore I spent the better part of the day there, in the car and at home on my couch crying and writhing in pain and feeling so out of touch as far as feeling like I want to stretch and yawn and sneeze all of the time and feeling jittery and then I have ativan for that but who’s going to help me get off of all of this crap later? The Pain Dr. said the Fentanyl suckers were “DANGEROUS” but how much more dangerous can they be? I’m on the patch all of these years and so are many many people. Its Fentanyl and its all the same. I’m not a drug addict and my body may be dependent but I’m still not an addict. That’s not fair when I never asked for any of this and never even took an aspirin for a headache prior to all of this !!
I wonder if my Dr’s received their letters in the mail yet? Maybe tomorrow huh? I hope that it at least makes them think and not hurt anyone else…Although they are so arrogant it probably won’t matter at all to them. Especially Dr Dobritt, he probably won’t even read it himself. His little teeny bopper clerk will probably read it for him and protect him from “mean and bad me”!!! Well starting day #5 now and it’s not gotten better but only worse and I will be calling the pain Dr today.and I want to ask him if there’s any kind of shorter or quicker acting pain relief that I can have because the Dilauded is chewing up my stomach and I am having a terrible time of it. I thought by now I’d be writing to you how great I’m doing and so happy to be done and feeling so strong! But NOOOO…intsead I’m feeling whiny and miserable, crying and in writhing and in pain. Im so tired of diarrhea and stomach cramps and not being able to sleep and when I awaken in the morning and now not being able to take that sucker, I have to lay there for about an hour to 45 mins. before I can even get up or try to get up!! Itfe feels like I’m getting up on broken feet that have glass in them and they’re broken in a hundred places…then it feels like my hands just hurt and want to explodell Getting up in the morning is the hardest of all and I dont like doing it without help and my husband wants to get up early to go get me a Dilauded so after 45 mins it can maybe work?? But they are not working for some reason for me…I took them for emergency pain help for severe pain afer a fall or a surgery and they seemed to help…they just are not made for me to take every 3 hours…I cannot….IM not…what am I going to do??? We called and got the Catapress or (Clonandine) to help calm me and help with the withdrawals and the pain…so remember that one folks…try to have Ativan or Xanax or something like that along with Imodium or whatever you can use for diarrhea and also get something to help with nausea like I did. Now I had to get TIGAN because it was the only one that didnt’ interact with either the pain patch nor the other stuff i’m on…but the Tigan has not worked for me at all. It did not help my diarrhea instead it made it worse. It also did nothing for my nausea….just saying…trying to help..
Gotta go try and get some sleep feeling really bad and gonna start to cry again…love,suzanne xo