Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain and I’m a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

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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