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

No Need To Be Self-Righteous …I love God Too!


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Hello Luvs,

I know I’ve been writing a lot lately. I guess I have many feelings these days. One thing I just want to touch on today is probably something that will bring on emotions for some people. I’m not a “fighter”; I’m a lover and a pleaser. The thing in life that I want to be most of all, is “there” or “available” for those who need a friend to talk to or someone to work things out with. I’m not trying to turn anyone’s beliefs into my own beliefs. I have my own and you are free to have your own as well.

I was reading my daily encouragement book called “365 Encouraging Verses of the Bible”. It is a “Hope filled Reading for every day of the year”. In Jeremiah 7:24 NIV it says “But they did not listen or pay attention: instead, they followed the stubborn inclinations of their evil hearts.  They went backward and not forward.”  I want to explain what this day’s reading taught me.  It made my heart and soul well up with tears for the people in my life and those not in my life.  You can have Religion but not necessarily have God.  You can think that boasting, putting others down, saying that if you don’t see outward signs of someone’s “Godliness” that they don’t have any.  You can even say that if people’s heads are not full of Bible verses due to lack of memorization skills as high as yours, that they don’t know God either.  But today’s reading just really made me deeply think about this.  You know people on social networks lots of time like to put up quotes. Sometimes these are Bible quotes, Hope quotes or just funny quotes.  But just because you can retype some words you found online doesn’t make your relationship with God necessarily any better than another persons.

The Jews of the time of Jeremiah were great at following the laws of the land.  They thought if they continued to sacrifice then they would make God happy.    In Jeremiah 7:22-23, God told them something different. He told them “I did not just give them commands about burnt offerings…but…this command:….Walk in obedience to  all I command you” (NIV, italics added).

The real literal wording of that last sentence reads: “They were backward and not forwards.”  They were doing, practicing their religion the wrong way.  They’d focused on outward appearances and actions and not the internal feelings and obedience to and of the Lord.

Earlier, the prophet Isaiah and predicted that the people would fall into captivity, they would regress backwards due to having a “little” religion:  “the word of the Lord to them will become: do this, do that, a rule for this, a rule for that; a little here, a little there–so that as they go they will fall backward, they will be injured and snared and captured” (28:13 NIV)

The goal for us Christians is always the same really.  John says it correctly in I John 5:3 NIV :  “This is love for God:  to keep his commands”.  IF you have true love and devotion for the Lord, it will show itself and be on display in all area of our lives without our physically trying to put it there.  It will just “BE” there because it’s in your heart and soul, not just in the perfect mind.

I want to say that I wish you a Blessed Easter, the resurrection of Jesus.  Easter is the most Holy day of the year, even bigger than Christmas to people like me, of Christian faith.  If you are a Christian, I pray that you find solace and comfort and love in the Lord.  That you feel him inside your soul and your heart, not just practice the motions.  If you love someone, show them; don’t tell them.  If they don’t love you back, love them anyway.  If you have people in your life who’ve hurt you.  It’s OK to feel sad about it and sometimes if you’re still fearful of them, you can forgive them without having them be in your life at all.  You do not have to reconcile with those who’ve hurt you in very big ways; at least not a “physical reconciliation”.  You can reconcile in your own heart and feel sad for them, forgive them inside; without the outward act of physically being in the same place with them. Just my thoughts for the day!  Have a Blessed Easter and be safe and keep on loving!
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Hope, Faith & A Change Of Pace


Hello Luvs,

Today I’m taking a turn…sort of another view because I do tend to speak of everything that has happened and how much is going on and what’s bothering me. It’s only because so much has happened in my life. Even the SSDI people and my own Psychologist says that I’m the “worst childhood trauma/abuse case that they’ve seen in the past 35 years”. My Psychologist says he’s surprised that I’m not “dead or crazy”and believe me…I’m not either of those things! LOL…I’m moving on with my life. I do still speak of things that hurt or bother me, but I don’t live my daily life dwelling about it all.
I will now tell you of the good things, the positive things that I’m doing in my life. I just want to share so everyone knows and I also see, because it’s in writing; that I’m trying hard to be happy and do good in this sometimes really crazy, hard world.
I’m a “mentor” for newly diagnosed RSD/CRPS patients! I love doing this because I still have my own Mentor too! It helps alot when you are told that you have this Painful, neurological, progressive, burning, hurting disease and you know nothing about it. It can be very scary and you need someone to talk to. Someone who’s available to talk to or ask questions. I have a support group for any kind of chronic pain patient. It is on Facebook pages and it’s called “Invisible Diseases, Especially Chronic Pain & RSD/CRPS”. I have 1,450 or so people in the “Cause” phase of this group. This means the phase for Research,Awareness,Support and Education regarding Chronic Pain Illnesses. That part is on CAUSES on Facebook and it’s titled “R.A.S.E. for Chronic Pain & RSD/CRPS”…I named it “RASE” and I thought that was pretty “catchy”…LOL..
The PAGE part of the support group as titled above is full of about 800 people from all over the globe, who are in pain and are suffering from one chronic pain illness or many! We all support and help each other. Sometimes now I can even “bow out” for awhile because I just cannot do it all with my own pain issues etc. They take care of me and each other now. I don’t have to take care of everyone because we all take care of each other. I do try to look each week and answer any questions and give support and any answers that I can, to new people or long time groupies! If you or someone you know has a chronic pain illness or RSD/CRPS, please contact me and I’ll point you in the right directions.
Now, I want to write about inspiration and Christianity and God. If you want to stop reading, now is your chance to go and come back next time, for another subject. If you have different beliefs and faith’s, I don’t judge you. This is what I believe, so please don’t judge me. I’m here for you whatever your beliefs.
My youngest daughter, Amy and I went to a “Beth Moore” Simulcast seminar recently (*September 15,2012). It was about how “God has not called us to “FINE” but he’s called us to “FAITH”. I didn’t get to stay for all of the 7 points she was going to make. I had surgery just the previous Monday and was in alot of pain. I didn’t want to miss this opportunity to spend time with my lovely daughter, who has recently moved out of the house and made me a full fledged “empty nester”..LOL. I had to try and go and I wanted to spend this quality time with her. We went to lunch and then went back until about 2:30 and it was finished around 4pm.
I just want to share some of the insights that I learned because this is a great forum to share and do some good.
I’m just speaking for women but it can be related by men also. This was just a “women’s conference” so I’m just going to be relating to that part today.
There are two spectrums that we can be on or someplace in the middle. There’s people that have nothing and some who seem to have everything. In other words one person might say “I’m fine” and the next might say “it’s all bad”. Usually it’s something or someplace in the middle. God doesn’t call us to “fine”…he calls us to “faith”.
When we are “needy” it makes us “weak”. If you think that you have everything you need….then you NEED to get a bigger, better life! In Phillipians God speaks of “contentment”. If you don’t ask then you don’t risk anything. We need to live a big life for Jesus, for ourselves too. I’m still trying, failing, getting back up and trying again. If you are at the full end of the spectrum, as in the person who “has everything” then you risk little. We have to risk drama or else we will “snore” away our spiritual life, our life in general.
Do you know or even realize how much “FEAR” is a crippler of life and of faith. It is never being able to realize or have a ‘miracle’ in our lives. In 2nd John:9 it says that “Fear lets the enemy take from me”. Sometimes we are afraid because of the life we’ve endured. I am one of those anxious and fearful persons. I used to be much worse than I am now; because now I have much more faith and love in my life.
I have many enemies, people who are cruel to me in my life. I’ve had one abuser after another in my life. Even today these abusers get pleasure from my pain. It stopped with my husband of 16 yrs, Craig. He’s my soul-mate and the love of my life. He and I speak passionately about things. I like that and it’s not abusive or mean or anything bad. I finally have someone who loves me for who I am and accepts me and who treats me with love and affection. In Psalm 44:5, the Bible states “through you we push back our enemies”…”through your name we trample our foes”. In Acts 18:9 it states “deal with fear today! Push back our enemy!” Beth Moore talked to us and she says as one of the points of our seminar; “Faith trusts that every call to forsake is a call to also take”. We need to forsake our fear and take our courage! When we don’t forsake our fear, we “take abundance of life”, she told us. We must want to decide today to forsake our fear and take courage instead!
Don’t accept bondage, fear, addiction, anxiety and all of those “bad” things that make us feel fearful and “bad”. NOW is the time for getting our faith back! Faith has no formula. There’s no way to “get” faith, you have to find it and have it. I’m still learning how to be faithful. It’s hard to push back the enemies, to have people in your life who want to “hurt” you and be “mean” to you, to put it simply. I’ve had honestly, more than my fair share, if you’ve read any of this blog from the beginning! I also have a private blog and if you want to read that, you need to contact me directly and I can add your name to the “allowed” list. It’s very private and deep and only about 10 people are allowed to read it right now, so far.
It takes so much faith to relieve yourself of “bitterness”. I need to forsake my bitterness in order to be faithful. It’s easy to hold onto bitterness when you’ve been abused and even when you’re still being abused when you’ve taken yourself out of the “situation”. Sometimes no matter what you do or where you go, you cannot run or hide from people who want to hurt you, especially when they are your own ‘blood’, your own biological family. Can you even imagine your own father and/or brothers turning your own daughter against you? Can you even imagine that this daughter has forsaken you? YOU..the one who was the ONLY person there for her, a contstant in her life always. Until she turned 18 and then took herself away and turns against you and spreads horrible lies and rumors. That is what has happened to me but I love her. I forgive her and I forgive them, though I cannot forget. I have to forgive in order to move on and in Psalm 119:39 it says “be kind to someone who mocks you”.
Lastly, I want to tell you something else that I got from the Beth Moore simulcast. If what we ask for doesn’t happen, it comes down to that “somethings up”. You might not understand it right now. I might not like it or understand it but God has his own reasons for NOT giving you exactly what you want sometimes. HE knows what’s best for us. If you talk to him and if you really “listen” with all of your heart and soul, you will learn to understand more fully what is his plan for your life.
I’ve been trying so hard not to be depressed, cry and have a horrible life because I miss my oldest daughter so very much. I think of her every day and I love her with all of my heart. I don’t understand why things happened or what exactly happened to make her turn against me after feeling so close to her all of the growing up years. I was a constant in her life. I was always there to support her and stick up for her and love her.
I don’t know why I got an abusive biological family who wants to continue to “hurt” me. I don’t really know anyone else who’s got so many health issues, so much physical pain and emotional pain; who’s “family” absolutely despises them/her and continues to push hurt and pain upon her/them. I just know that if God hasn’t answered my requests, then he has his own plan for my life. He knows and only he knows “why” I cannot have her in my life right now. I can only hope and pray that my trust in him continues to grow and I learn to accept what “IS”.
Faith rests its case on the resurrection of God. He rose from the dead and he died for me, for all of us. We can get rid of a “bad life” for a good life with God..or what Beth Moore called a “God life”! In Ephesians1 18-20 it speaks more about this. I will end here and leave you to your thoughts. I hope I have provoked some good thoughts in your hearts today.
Forever yours, Suzanne

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