The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

People With Pain Matter


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

 

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

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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

Days #3 And #4 *(And beginning of Day #5) -Withdrawals from Fentanyl Lollipop


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Hi Luvs,

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

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Day #2 Withdrawals from Fentanyl Lollipops


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Well my friends, today is the end of the 2nd full day of my withdrawals from the major doses of Fentanyl Lollipops that my old GP had me on for the past 10, 11 years now. Yes….I do have many high pain issues but he should not have done this to me. Nothing I can do now, I cannot whine or complain because I must get to the business of getting off of these totally and never going back. But I cannot say that I’m not afraid. The suckers are so far the only thing that have worked for my horrible pain! Everything else either makes me really sick with awful side effects and nausea or it doesn’t seem to work well for me.  Today I’ve felt a little bit less of the “wanting” for the suckers. I have felt chills and I have also felt as though I am going to burn on fire until I am just ashes on the floor. I feel so hot …..no..you just don’t understand….I feel so hot and I sweat and I’ve had this feeling all through my RSD/CRPS too, but this is even more powerful. It wakes me up at night and I’m soaking wet and I just wanna “die”. No …,not really. …I don’t want to leave this world or die…it’s more of a “feeling” when that happens that I just need for it to end right then and I cannot take it for another moment.

Today, I had to go to my GP…it’s only my 2nd time seeing him. I am unsure about him. The other one, my old one..he did take over when his partner left after 12 years. He did get me the meds that I needed to keep me from being so deathly ill or dying. I think that he thinks the only reason I went to him was for the suckers. Well, he used to be my full time GP and I started seeing his “new” partner 12 years ago  because he was so “nice” to me and kind when I was hospitalized for pain control. I had been a  patient at first of the Dr. who has taken over since my GP of 12 yrs left abruptly after over medicating many of his patients including me . **My former Dr/GP went to an urgent care in Jackson Michigan called Med express. He cannot write controlled substances anymore because the FEDS came into their office and he was found to be over medicating people. Unfortunately, I am one of them. I have been a trooper, motivated and trying with all of my might to get lower and lower doses of the pain suckers since January 2015. I got down 80% and now since Sunday night going to bed with one in my mouth, I’ve had ZERO….NADA….NONE!!! I’m now in my 2nd full day and at the end of it actually.

I was a patient there actually since 1986 and the Dr. who has taken over my care, WAS and had been my GP since that time and until I asked the “new Dr” to be my GP when I was hospitalized in 2002 following a MVA. I only stopped seeing the first Dr. because of my parents, who had been horribly abusive on many levels while growing up and even as I was an adult and I confided in him. He helped me to get my SSDI and he believed in me. Until one day 10 years later, my parents walked into his office and started becoming his patients. Instead of him telling them that it was a breech of some kind or unethical or something, he came to my patient room and told me “wow your parents are now my patients too! They seem like nice people and they say that they’ve done none of the things you alleged that they’ve done!! You seem like a nice person too and now I don’t know who to believe”??? Well, that was enough then and there I got up and left that practice. I tried a few other Dr’s but didn’t really like any of them. Then after the car accident I got scared because I knew so much was wrong and I had so much pain issues. I needed to go back where my records were and where someone knew me and my history. I told him what I thought about what he said and did and then the new dr arrived on the scene and to make matters easier for everyone, I started seeing him, Dr. Pete Bullach Jr MD.

Well, he helped me and told me that he would “be the eye in the middle of my storm”. I wouldn’t allow anyone else to prescribe meds for me. We tried many different pain meds and they all made me ill, sick, and left with my pain. They didn’t work for me and 99% gave me very bad stomach issues including pain and cramps. I finally found the suckers and they worked for me. They worked for 10 years for me. I did suffer from a heart attack shortly after starting them and then one year later I suffered a CVA. Who knows if the suckers were the culprit or if it was the TBI or any other number of reasons? But I’ve since read that the Fentanyl lollipops long term, can cause such problems with health. The pain Dr. I have now and who I’ve only seen one time so far and will see again at the beginning of August, he says that they are for “end of life” and they are “very dangerous”. I don’t understand the dangerousness of them though? Why am I able to stay on the Fentanyl patch and take Dilauded but these are not dangerous?? I guess I just don’t understand. I am just blindly doing what I have to do because either way I need to get off of some of these things because I absolutely HATE feeling “married” to these pain meds and the men with the power to write them for me.  The Government thinks they know what pain patients need and they think they know which kinds of pain are worse than other kinds of pain. Who are they or anyone to say that One pain illness is more painful that my very painful pain diseases called “COMPLEX REGIONAL PAIN SYNDROME” or “CRPS aka RSD”…??? I will never understand but I don’t care. I am strong and have always been strong. I don’t like the feelings of withdrawals and as of day #2, today, I don’t crave the “sucker” part so much. But in waves I feel terrible and in pain and tired, exhausted and sick. I don’t know what will happen but I pray that this new pain Dr will be good to me and keep on believing in me …

I dont know if I have shown you the letter that I have written to the : Dr who took over for my old doc who got into trouble, to my old GP who is at the Urgent care now and the same letter was sent out to the pain Dr who took good care of me and I was a good patient of his from 2002-2005, but when I went back for help at the beginning of this ordeal on January 2nd, 2015, he refused to help me or see me unless he could pass me off to a “friend of his” to be “screened” first by him  because he must not trust his own judgement? I’ve sent them all a letter and I would love to share that letter with you. Below please see a copy of it. I do praise the one doc for helping to take over me and help me through this even though I’ve heard that there are and have been very very many that he just totally “threw overboard” and “let go” and gave them a script and sent them on their way and told them “not to come back”. These were legitimate pain patients because I knew or know a couple of them. I feel or felt the need to get out what I needed to say. I truly am thankful for the one Dr/GP for helping me to go down 80% off of the suckers. But I had no choice in the matter. I was and am at the mercy of all of these people and I absolutely hate it. With my background of abuse and PTSD, it pains me to have someone else in charge of me and my care. I can only hope that the new Dr will continue to believe in me and care for me in a kind and caring way and never give up on me.

So here I sit at the end of day #2 and I’m feeling very very ill, hot and burning up as if to be on fire!  I feel cramps and runny nose and eyes and cannot eat much or hold in anything much. I’ve been trying to to drink but when I have hot drink, I burn up and when I have cold drink, I feel freezing cold. Everything is screwed up and I feel like I am unable to concentrate on anything. I am vlogging this experience on YOU TUBE also. So far they are “private” and if you want to watch them, please email me : suzannebstewart@aol.com and I will put you allowed to watch the videos. There are 2 so far and they are dark and made at night, very late when I’ve been feeling my very worst.  Thank you for your interest and I hope one day that this account of my days going through this ordeal, will help someone.  Also, things that help with the fire or “on fire” feeling are : cold paks that are in the fridge, around my neck and cold drinks. When I’m hot I try wearing light clothing and drink more cold drinks as I’ve said and I’ve been sitting stilll, quite still. I’m having a hard time with concentration too. Please check out the letter that I’ve sent out to all 3 Dr’s, below…..thank you again, Suzanne

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The Letter:

July 13,2015
Dear Dr’s Brateman, Bullach and Dobritt;
I am writing one letter in the same, to all three of you. First of all, to save myself the work of trying to say many of the same things to all 3 of you. Also, this way you’ll be able to better understand how I felt about the breakdown of our patient/Dr. relationships.
First of all, I want to say “thank you ” to Dr. Brateman, for allowing me to stay on as a patient and help me reduce my pain medications. Between Jan 1st and July 13, 2015, I brought myself down to Zero, from the huge amount of Fentanyl prescribed for me (by Dr. Bullach). Dr. Brateman was the only physician who had the guts to stick by me. I’m a chronic pain patient with quite a list of real and horrible pain issues, including Systemic “CRPS!
I have been through a lot in my life, but this has got to be right up on top with the worst treatment of a human being that I’ve personally felt. I’m astounded and ashamed at the treatment I’ve received from Dr Bullach , who told me for 12 years to “trust him” only to be betrayed and left to suffer on my own, if not for Dr. Brateman.
Next, I went to my scheduled appointment on Jan 2, 2015 with Dr. Dobritt. He informed me that he “never received a letter, records or a phone call from Dr. Bullach regarding my case”. Another deception by Dr Bullach. During that same appointment, Dr Dobritt initially indicated that he supported the treatment regimen that Dr. Bullach had me on. But then he “back peddled” and referred me to another pain Dr. I told him that I didn’t wish to see another Dr. I’ve already seen multiple specialists as a result of a MVA in 2002. He’d been my pain Dr. for 3 years following that MVA and I had trusted him.
I went back to Dr. Dobritt in April 2015, after I had gotten myself down 80% from the Fentanyl prescribed originally by Dr. Bullach. I thought he would be proud of me. Imagine my shock & dismay when I arrived and Dr Dobritt refused to see me. He sent a clerk to tell me that he would not see me because I had not gone to be screened by the other pain Dr. prior to this appointment. I cried and begged for him to help me. I was afraid and felt alone in my physical pain and feelings of betrayal and mistrust with the medical professionals who are bound to “first do no harm” according to their own creed. I felt betrayed by his obvious attempt to pass me off to another Dr. instead of helping me.
Because of my own tenacity, I have since found a caring pain Dr. who has helped me get completely off of my former regimen of pain meds. He was equally appalled at the way I had been treated by physicians that I had trusted. Dr. Bullach, your actions; and Dr. Dobritt, your inaction, put my health and possibly my life at risk. You should both be ashamed at the way you treated me and you left Dr. Brateman to clean up your mess. I hope that the two of you do some soul searching and NEVER treat another human being the same way that you have treated me.
With deep sadness, Suzanne Stewart

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