All For One, None For All


Gosh, to think of all the positive blog stories that I’ve posted. That’s how I met most of you. Through my perseverance and positivity. But lately, I’ve had lots of “downers” & I apologize. I do apologize …but not before another “not so upbeat” post. So remember how I was trying to be there for my dad? He recently was inpatient at hospital & he had to have the “Rapid response” revive him twice at age 88. I went even though I was told by him & my brothers, not to come. Well then, I was given times that I was supposed to go because that would help everyone else. Because I’m a high impact pain patient, I’m up at night. That doesn’t mean I’m out at night doing stuff. That means, I’m at home in my PJ’s unable to sleep due to pain issues. But the entire 12 days before my major surgery, I spent with my dad and going when I was told to go and even when I wasn’t.

When he got put on dialysis, Craig & I showed up. I was told by my brother that it would be “all day or at minimum 4 hours so we couldn’t see him” (& supposedly they couldn’t see him either). So I called their bluff & said “well we will just wait. We can wait 4 hours here with you!” Ahhh but then he says 5 minutes later “we can go in after the dialysis nurse gets things started actually in about 1/2 hour”. Hmmmmmm??? A far cry from 4 hours or more. We stayed & said nothing. I even went to see my dad the night prior to the day before my surgery.

I was texted the day before my major surgery, by my brother who asked if I was coming up in the evening (to relieve him, I’m sure bcz he was leaving)… or “when was I coming?” That day I said I couldn’t come because I had to do some stuff for myself before the surgery. I’ve not heard from anyone since then.

I’ve texted my dad daily. But not once has it been about me. Never has been…never will be. But my brother called Craig once & said he was on his way to see my dad… told Craig about my dad & asked about my surgery for a moment in the end.

(Side story:**My dad told me that my middle brother (who I don’t see, for many good reasons & haven’t for almost 17 years)told him that he “doesn’t & hasn’t prayed for me for all of these years but he will pray for my surgery “for my dads sake”… WTH?? He pretends to be a priest! He buys all of the stuff online & even bought a certificate that says he’s a “bishop”… he has a fake chapel that when you go to Google Earth, it sends you to his house!! If you go to his website you see that people send him money as “donating to his church”! There aren’t even any real services held. One lady online wrote on his website, “me thinks he’s a fake”! Well me thinks so too! I stay far away from him and I have always and since I took several PPO’s out against him. (The Domestic Violence Shelter helped me!)

My dad is at cardiac rehab now & he’s actually getting better. But it really hurts that my family has not cared about me & they continue to say “we’re always here for you!” My dad continues this fairy tale “that if ever I needed any of them, they’d be there for me “even with our differences”!

Well, I’ll tell you…. they’ve not been there & haven’t been since I was a child. Once when I called my big brother, after I was in a catastrophic car accident. I suffered a TBI & his phone number was the only one in my head. I even hit myself in the face by accident with the telephone, in trying to call him because I felt in pain & afraid. He answered the phone with “Oh…you need someone ?…”. CLICK & the phone went dead! He hung up on me! I suffered 3 years of brain injury rehab. I’ve gone through 10 surgeries now! They tried to turn my daughters against me when they were teenagers also! They were not ever, nor have they been there for me at all! They’ve only tried to hurt me more & “kick me when I was down”. Luckily, the love, protection and bond that my daughters, my husband and I had/have, pulled us through! We are as close or closer than ever! They are older now, with families of their own. They look back & now understand & see what truly happened. Having children of their own, they can’t fathom what happened to me! They don’t really see or talk to any of my biological family. But when my dad was dying, I got them to come & to make a FaceTime call.

Now that my Dads in cardiac rehab, he /they are back to their same horrible treatment of me. They’d still throw me face down in a mud puddle, in the middle of a busy street during rush hour; if it would give them my daughters and grandchildren.

Another thing that I can’t fathom is the way my dad & brothers have treated my dads girlfriend/live in partner of 12 years. She treated me absolutely abhorrently when I introduced myself to her the first time, years ago. Again, another “victim” who only knew one side of their story.

But guess who was nice to her? Guess who was concerned about her feelings when my dad & brothers refused her entrance to see my dad while he was inpatient & dying. She texted me until the wee hours of the mornings. I was kind to her & told her she should go visit him anyways. She is my dads “creature” too, unfortunately. She stayed away & barely got any information from my brother. She asked me to help her to get a pill reminder because my dad did all of that for her. He infantilized her as he’s tried to do to me. I cared about her & promised her that no matter what happened; Craig & I would visit her & try to be there for her as much as possible. Guess who I never heard from before or after my recent major surgery?? I’ve not heard from any of them! I’ve sent texts for 3 days in a row & never have received a response from my dad. Yet my daughter texted him while she was visiting us with our granddaughters yesterday. He texted her back right away & asked if he could call her? She said she was at my house & he could call anytime.

I had to fight in order to be included as one of my fathers 3 adult children. They said I was “too frail & too weak to come visit because I might cry & hence, make my dad cry”! Oh My Gosh! I’m stronger than any of them put together! I’ve been through a hundred times more pain and abuse than any of them! I told them they were not going to shut me out again, like they did when my mom died. I am strong! I told my dad that he has 3 children, not 2! My oldest brother pretty much gave up a life of his own in order to be “the honored one”. He does everything for my dad and we’ve been shut out for years.

Only when my dad thought he was dying did he say nice things to me. He told me (after I put my foot down & insisted that I was visiting him in the hospital) that “it was a treasure to have me there every day”! He said I was a “dear, dear, sweet person & he loved me”! I cried & couldn’t believe those words were said to me.

I’m 10 days post-op and I’ve barely been out of our home. I cannot visit him right now. But as I’ve said, I texted 3 days in a row with zero response. The 1st day I did get a quick response when I tried to tell my dad (who was discharged & on his way to cardiac rehab) that my surgery was over & it hurts quite a lot. I sent a couple of pictures. But the response I got was unfathomable. He told me “it looked like a nice, neat job” (*pictures above & below)! Even though I actually looked like I’d gotten beat up or walked through a war zone! He then told me about his bathroom issue of the day.

None of them called or have cared about me at all! My older brother called Craig once after surgery & that was because my dad wanted to know if I made it or not, I guess? Then he told Craig about my dad (as I was being put into the recovery room).

I’ve had 2 pacemakers placed and 8 other surgeries in the past 17 years. I live with systemic RSD/CRPS. They don’t even know what that is & never have cared to ask or see any of my special needs. But my dad got a pacemaker 6-7 months ago at age 88. They made such a huge deal about it! I tried to explain that I’m on my 2nd one and got my 1st at age 40! I told them that “it’s not so bad”! They were indignant & furious that I didn’t see that him getting a pacemaker was the end of the world as we know it!! I never got one ounce of empathy, love or even a phone call after any of my surgeries nor either of my pacemaker surgery’s.

It’s a horrible rollercoaster. I stop seeing & talking to them for months at a time. Then I get phone calls asking me why I’m not calling my father? I’m so tired of being treated like the scum under the sink! My dads managed to turn all but 1 or 2 of my cousins against me & all of my aunts & Uncles. The one Aunt who never judged me and somehow saw through the charade, died a year or so ago. I have a couple of cousins who know, saw & understand the truth. One of the 3, passed away last week.

I had a favorite aunt once, she used to put food into my pockets when I’d leave after visiting her house as a kid. She has stuck by my dad & his stories. I asked my dad earlier this year if he’d told that particular Aunt, that we we’d been meeting for dinner the past few years and had been chatting etc? He told me “she doesn’t care about you she has no use for you!

I dared to speak the “family secrets”. I dared to get help and be a real & separate person. To make a healthier & better life for my husband, my daughters & myself. It’s been hell and I’ve tried to keep kindness, hope & empathy in my heart; & God in my soul.

So all in all, I almost lost my dad this month. Regardless of how I’ve been treated, he’s still my dad & we only have one dad. I also underwent a major & very painful surgery 10 days ago. A tumor was removed from my middle ear. The surgeon drilled into my skull and mastoid bone. Ten days later, I’m still suffering with a lot of pain & fatigue. Once again, I feel totally ostracized & uncared about by my biological family. There’s only one person whose been by my side for the past 23 years & that person is my husband & soul-mate, Craig. We’ve been by each other’s side through so much and I thank God for him every day.

Update On Upcoming Skull-Neuro-Ear Surgery


Hello Everyone !

Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!

**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…

Feel free to email me: tearsoftruth@yahoo.com

Love ❤️

Suzy

Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!

Inhumane Treatment Of Pain Patients In USA


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

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

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

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

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

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

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

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

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

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

ASL is a Cultural Identity


I love American Sign Language 🤟🏼 ! I am a part of the culture and I’ve been since I was 11 years old! I was mildly hard of hearing due to many ruptured eardrums, untreated. (long story-see private posts and just email me for the password. Email me at: ASLSuzyQ@gmail.com)

Hearing or loss of it, is not a handicap and neither is it a weakness or a disability. Deafness is a cultural identity. I have had a tumor (Cholesteatoma) in my right ear since approximately 2014-2015. I didn’t know it was there. My hearing diminished even more until it was completely gone in right ear and moderate/severe loss in left ear. I recently had surgery to remove the Cholesteatoma, but it was very large & now (7-2019), my right ear is closed. But I became moderate Deaf in my right ear and Severe in my left; after a Traumatic brain injury due to a motor vehicle accident in 2002! I am proud to be in a culture of warriors and Deaf historians! The music & words are all a bit mushed together. I miss a lot in verbal conversations. I nod my head and hope for the best. I feel a bit lost sometimes in such instances. I’m so very lucky to know what I do know about the naturally formed language of ASL. I’m fortunate for my experience as an Interpreter at a hospital and at Universities and school settings in the past. Ironic isn’t it, how life can take a turn?

But what does bother me is when people pretend to know ASL, because they know “signs”. The first lesson in ASL is that a sign does not equal a word! A sign equals a concept! I go on YouTube all of the time and I see people acting as though they know the language. They post a song and then post a “tutorial ” and then proceed to teach others incorrect signs and fake ASL; which is PSE at best. But do you know that PSE is not a language? It’s just a mush mash of signs in English word order. So then, you’ve taken a beautiful Language like ASL, and desecrated it! Anyone can do anything they want because it’s the internet. If you want to post songs and such in “Sign Language “, then by all means, feel free. Just write up a bio and explain that you’re just trying or you’re practicing your use of ASL. Say that you’re doing your best or that you are learning the language. But don’t call it ASL, unless it is. Then please do not post a tutorial unless you’re truly sure it’s correct and grammatical ASL. It is just the respectful thing to do. We don’t like our language polluted & then taught incorrectly to others who are vulnerable and learning.

I have a few videos up from the beginning of my YouTube channel that are a bit PSE. When I first started my Youtube channel, I thought I was supposed to sign the songs in English. I thought the words were important for songs. But words are not important. It’s the concepts that are important.

I don’t make tutorials because each person may sign the same song a bit differently. It’s a choice in lots of instances; a choice of which signs for the concepts you want to convey.

Yes, please learn the beautiful language of American Sign Language, ASL! But don’t be arrogant and don’t be a student teaching other students! Let the teachers, native ASL language users, Deaf community & CODA’s teach those who wish to learn! I honestly do not mean to dissuade anyone from making videos and having fun. I only mean to please not make tutorials if you truly don’t know for sure that it’s ASL. Don’t be the “blind leading the blind”! That’s what I’m getting at most of all, I suppose.

Feel free to join my ASLExpress group on Facebook. We are a group of people who love the language of ASL. We enjoy Deaf culture and we share communications and stories in ASL. We are a group of Deaf, HH and Hearing persons who love, use and respect the language. We are a combination of all levels of ASL users; from beginners through native Deaf. We like to teach, learn and make friends.

I also have a page called “ASLSUZYQ”; on Facebook, Instagram, Tiktok & Tumblr! I don’t claim to know it all. I learn new signs everyday! I’m always willing to help and take advice from the Deaf “elders” in ASL! I’m actually taking an online course in ASL gloss for songs. It’s called “Beyond Words” with Rosa Lee Timm! It’s a blast, though due to chronic pain and illnesses, I’m a bit behind. Thanks to the Internet, I can go at my own pace.

One Call Away in ASL is my new ASL Cover on my YouTube Channel. This link will take you to my YouTube Channel @ASLSuzyQ, My ASLSUZYQ Youtube Channel !

Below is my granddaughter &!me (I actually have 3 granddaughters & 1 grandson)! I’m teaching them ASL while they’re small because young minds are like sponges. The littlest ones learn the language so fast!

A Body Of Hope



Hello Luvs,

I was reading my news feed today, feeling very much alone in my pain. I have a wonderful husband who does so much and he’s my soul-mate. I have two lovely daughters and 3 granddaughters, ages 1,3 & almost 5!

We had the 2 older ones sleep over last night. So far we have only had the eldest spend the night. That was easy and awesome. I love them all the same! They are my little blessings. But now I’m in so much pain, that I read the following post with tears in my Eyes. I feel like I’m swimming against the current bcz I try so hard to be upbeat and as “good as I can be”! Today’s been really tough and I’m hard on myself ! This writing is beautiful and the writer is not only a long time friend & Facebook friend; but she’s a talented writer. I have reposted her writing here, to share with you her beautiful words. She has a blog called “A Body Of Hope”. I hope you’ll check it out! Without further hesitation, here’s Mary Mattio’s beautiful words:

*********************************

~If you’re having a bad day…this is for you
You have every right to feel overwhelmed, as though no one understands, maybe you feel afraid, or even hopeless. As far as I know, everyone living with long term illness understands these feelings. I know I do.

Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones needed to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of stress, constantly, over a long period of time that can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like, serotonin, oxytocin, and dopamine are no longer in balance to counter the feelings of uselnessness, loneliness, and hopelessness. What might be a passing thought, thanks to the rigors of chronic illness, becomes a spiraling pit of despair. Pain gets into your very soul, and exhausts every resource. 

This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness and pain swallowed me up.

If anyone is reading this and is being swallowed up, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has blocked. 

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be. 

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning things from this battle that no one can ever take from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing. If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them? 

You can do this. Though you may be exhausted and even fragile right now, you aren’t even sure how you’ll go on another day. The pain is pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every treatment, surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today. 

You are beautiful. Sometimes we lose touch with our bodies, to separate and protect ourselves. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (PS. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.

You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from our loved ones. Who we were can float away, and illness begins to take us over. You are still her! You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s. 

One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perspectives change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness. There is no doctor or article online that can assure you of what tomorrow will hold. As much as your body and mind yell words like “incurable, degenerative, progressive, comorbidities,” instead let HOPE be your weapon of choice. 

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

-Mary Mattio

@abodyofhope
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

How Great Thou Art -ASL


A beautiful song was in my soul today! I went to church and asked if I could use the chapel! So this is “How Great Thou Art” sung by Carrie Underwood! I hope you get chills like I do!

Trials of a Chronic Pain Patient…..


imagescanandwill  Hello Luvs,

Have you been betrayed by your Dr? Do you feel like a “common criminal” because you are a legitimate chronic pain patient? Then please read on:

So if you follow my blog at all, you know that my GP, or my General Dr. of the past 13 years just quickly left the practice he’d been working at for many many years. I had an appointment in October 2014. I showed him a letter that I’d rec’d from my insurance company stating that I must go to a pain specialist and that he/she must agree with my GP’s treatment plan; in order for them to continue paying for my pain medications. The letter also stated that If the pain specialist did not agree, they would stop paying for my pain medications on March 1st, 2015. My October 2014 appointment was only for the purpose of making sure my Dr. would help me arrange the pain specialist appointment, send him a letter & call him to explain my extensive and unusual situation. My GP, had been the one person I trusted other than my husband of 18 years and my Psychologist of 15 or more years. I don’t trust many people due to my longstanding history of being abused and being a survivor of domestic violence. That is a story for another day, but you need to know why I feel so betrayed!

Since my car accident in 2002, (*a man ran a red light and I was injured terribly), I have endured so many injuries, surgeries; including 2 pacemakers, along with suffering a Mild Traumatic Brain Injury (3 yrs of TBI rehab), a stroke and a heart attack! Then to end up in 2007,after a foot surgery with CRPS type II. The CRPS II then spread and has been systemic since after my 2nd pacemaker surgery, when they found that my 1st pacemaker had worn a hole right through my pectoral muscle; which then had to be rebuilt.  My excellent Neuro Cardiologist researched RSD/CRPS and found that sometimes an inner surgical wash of “Bipvucaine” (*which he did do) may help stop the spread of the disease. At or about my 6 week post op checkup, I found out that my CRPSII did spread and it is systemic. My pain is very high and I have several other pain illnesses and auto-immune/Neuro autoimmune disease.

I had been to an excellent, well respected and kind pain Dr. He has a good bedside manner and is very intelligent. He tested me in every way possible. I followed through with whatever tests he wanted and I did all that he asked of me. I had several Epidural blocks, trigger point injections, Cortisone shots, Biofeedback and more. I was tested by the pain Dr’s own Psychologist and Psychiatrist. They concluded that I did NOT have an addictive personality. After trying many pain medications which either made me ill or that I was allergic to, we found one that actually worked well for about 2 years. When all else failed, I was offered an intrathecal pain pump; but refused it.  I am a smaller stature person and could not imagine something the size of a “hockey puck” inside of my gut & under my left rib cage forever!.  Finally, I was put on a pain patch for 24/7 relief and pain lozenges for breakthrough episodes. Because I was only receiving pain medicine and needed it in order to try to have any kind of quality of life whatsoever; the pain Dr. referred me back to my GP, who was Dr. Bullach. He  told me that he would be  “the eye in the middle of my storm”. He would prescribe all or most of my medications. I lived with those meds for the first 3 to 7 years. Finally, the pain stabilized and I stayed on the same dosage for the next 5 years.

I started out after the car accident, being in a hospital bed in my home or on my couch as well. I could not even move without excruciating pain. When I got to the point where I was put on the pain meds that Dr Bullach gave me for those 10 years, I was able to do a few things. I was able to get out of the house. Every time I would ask Dr B. to reduce my level of pain meds, he would tell me “No …you let me worry about it. You don’t want to end up back on that couch or hospital bed again.” He told me that “I should not worry and if/when the time came & I was able to reduce my pain medications, he would “put me into the ICU so that I wouldn’t have to go through anymore pain”. He told me that I would “wake up and it would be over without my having to go through feeling any of the withdrawals.” But every time I would ask him to let me reduce the amount, he just told me the same things. I trusted him and He told me that he was “the eye in the middle of my storm”. He told me not to worry about anything! I did trust him, but still I worried.Though I’m very naive, when it comes to medicine because I never drank alcohol, smoked cigarettes,pot, nor had I ever taken any prescription pain or street drugs in the past; prior to that car accident. I am a lay person and had no idea what a good amount or a right amount of pain medication is. I trusted my Doctor for that!  I wish to reiterate that I asked him over and over again, to let me reduce the pain meds.  I acquired RSD/CRPS in 2007, after surgery on my foot. I have it as well as the other car accident injuries and surgeries. Later, the RSD/CRPS II spread to my full body.

So….in going back to that letter that I received from the insurance company, I took it to my ex GP, Dr. Bullach in October 2014. I felt it inside of my heart and soul that very day, that something was not right! He looked me deep into my eyes and said “you need to just see a pain Dr and he will agree with my treatment and its just a formality.” I told him that I was afraid….scared and could I go back to the same pain Dr. that I had known, liked and been to for several years prior. He said I could go to that pain Dr and because I was crying and afraid, he absolutely promised me that he would  call and personally speak to the pain Dr. and send him everything and /or anything that he may need in order to help me get my medications continued and paid for; in order to keep my pain at least at the level it’s been at,so that I could continue to have some sort of a life outside of laying on the couch in pain all of the time.

When we left that appointment in October, I told my husband “something was not right today”….I said that it felt weird and different. I told him that Dr. B. looked at me so oddly as if he wanted to say something but instead he was robotic and went about his business. I took him at his word when he said he “PROMISED to call that pain Dr. and send him a letter with all of the info he might need, in order to help me.

I made my pain Dr. appointment for Jan. 2,2015. But prior to that appointment, I had one more appointment with Dr. B. and had no idea what was in store for me. Two days before the appointment, with no prior knowledge; I received a letter from the other Dr. in the practice, the one who actually owns it.  It was very short and just said something like “Dr Bullach will no longer be seeing patients in our office as he accepted another position at an Urgent Care in another community, Jackson, MI; about an hour away”!!! I was not only shocked and devastated, but afraid and just couldn’t stop crying. I trusted another human being and yet another human being broke that trust! All I could think of was “what is going to happen to me now?”

I went to my appointment, the last appointment with my Dr. Bullach. I spent the whole entire visit for about 40 minutes, just crying. They never examined me, nor even touched me. I didn’t get my blood pressure checked, my heart wasn’t listened to and I have Atrial fib, Long Q.T. and a pacemaker.  The Dr. did nothing that day (he did nothing the prior appointment as well, which I also thought was odd). It was as if he’d just given up on me and didn’t care anymore. He would not give me my prescriptions that he’d been giving me for the past 10 years (although no increase the past 5 yrs). He told me again, “not to worry because the other Dr. in the practice would take care of me just the same and he would prescribe the same meds and everything was going to be O.K”. The medical assistant, “C.” even told me those exact words. She even told me that “if the new Dr. didn’t write the scripts the same way Dr Bullach did, that she would take him into the hallway and explain to him what to do and how to do it”.  They all told me “not to worry” and “my treatment plan would stay the same”.

I went to my pain Dr. appointment on Jan 2nd, and he was surprised to see me. He had no idea why I was there. He had received ZERO information from Dr. Bullach !  There was no letter sent, no phone call absolutely NOTHING came from that office. Finally the pain Dr. decided to call that office and he spoke with the other Dr. there. He came back to tell me that the Dr. I’d trusted all of these years, had “over medicated me up to many many times the normal amount”!! I was in shock as was my husband.  I was angry and afraid!  I suffer from PTSD which is one of the health issues that has rendered me “disabled” since 1998! The pain Dr. and the other Doc at  my GP’s office spoke and  “THEY” decided that I should go to a brusk,  physician who doesn’t believe in pain medication except to detox people! He detoxes everyone and puts them on something else like Suboxone or Methadone as if all  legitimate pain patients with HUGE list of pain diagnosis’ like mine, are just equal to a common criminal. I researched that Dr. and we spoke to the Dr. who owns the practice where my GP had treated me for all of those years.  My research proved that the “detox” pain Dr. does NOT believe in Opiods, Narcotics even for legitimate pain issues, diseases etc. He has 16 horrible reviews on several “rate your Dr.” websites.

When my husband was on the phone with the Dr. who owns the practice where I’d been going all of these years, I could hear him yelling over the telephone while my husband was talking to him. He was angry and yelling loudly. He said that “Federal Marshals came into their practice, and that my Dr. B. over medicated many other patients, not only me! I’m furious to say the least. But I also heard him say that he could no longer see Dr Bullach’s regular patients or prescribe meds for them any longer.

I am feeling so betrayed and hurt and afraid. He left me on a high dose of medicine and gave me no choices except to go to a scary place and have all control taken from me. Let alone, all control taken from me by a brusk, angry type of Dr. (according to many many of the rate your Dr websites!).  My psychologist and everyone who truly knows me, says that is the very worst thing anyone could do to me. I suffer from PTSD and I’m very afraid of many people. I’ve been abused and assaulted and even sexually molested and I was absolutely NOT going into some unfamiliar place and lose all control!

Well, that was then, on January 2, 2015. Even though the pain Dr. wont see me yet, or have anything to do with me until or unless I’m down to a very low amount of medications for pain. I have done it myself and have tapered off of the meds all by myself. In the past I have had a stroke and a heart attack. I have a pacemaker and I have Long QT and A-fib. I have several, awful,terribly painful illnesses but I still am doing it myself!  My “stand in” GP, who sort of “took over” when the other guy got in trouble and left; and who is not happy that he got “stuck” with me as his patient, said that he “got stuck with a mess when Dr Bullach left him with all of these pain patients that the Dr. just kept giving meds to. How could a doctor do this without caring about “US” as real people? Why would he do this to me? I want to live a good life! I’m a mother, wife & grandma and I have a lot to live for. I have a loving and wonderful husband. I’ve not ever done anything illegal or immoral. I’ve never hurt anyone on purpose and I was always so afraid of dishonoring both God and my own father /parents; therefore I just was always a “good girl”. I stayed and grew into a “good woman/person”. I never even took an Aspirin for pain before that car accident, when I would get headaches in the past!  Would he have done this to his wife or his sister? I just will never understand and I truly feel so sad and betrayed by him.

I have been to the Neuro Cardiologist who said that while I was there for my appointment in January, I was diapheretic *(sweaty from tapering the medications), and my heart was in Atrial fibrillation.  Luckily I have a pacemaker. The Atrial fib is just annoying. I’m being paced with a dual chamber pacemaker. I have a cardiac monitor next to my bed which is watching my HR and BP  24/7/365. It’s connected to my pacemaker via some kind of air waves, making the A-fib a bit more safe.  I’m also on Coumadin, which  helps with the blood clots that Atrial fibrillation can cause. I am keeping track of my tapering and I’m doing this all by myself. My husband is awesome and he’s there for me. He’s helping me by reminding & writing it down with me. I will show everyone that I am strong and that I can do this.  If you are not an addict…if you are only taking what is prescribed by a legitimate Dr. and you are a good, person…then why not be able to take what helps you the most and gives you some semblance of a life? Why treat someone like that as though they are a “common criminal”??.  I only went to one Dr. for all of my medication. I’ve only gone to one pharmacy for the past 26 years! and I asked for the past 3 years, for help in reducing the amount I was taking. I am now down to 1/3 of what I had been taking and I will find someone to help me from now on. I will need something for pain for the rest of my life. I have REAL pain illnesses and real diagnosis’.

The above is just about me and my own story. Maybe some of you have been through it? Maybe you know of someone who has a real chronic pain illness? I’ve done some research online, if I refer directly to something specific that I’ve read, I will tell you where I found it….otherwise it is just general research and my opinion mixed together with my own experiences. If I can help just one person who is suffering, then I won’t be suffering in vain. It appears that Opioids can be a safe and good treatment for some people with non malignant chronic pain. From reading about research I’ve found that there are risks and benefits to the use of Opioids for chronic non malignant pain. The potential risks could be abuse and awful side effects. These can be tolerated and/or managed at least. I think if you have tried all of the things like I have tried, including trigger point injections, epidurals and nerve blocks, TENS, biofeedback, and you just get minimal improvement and only for a little while; then maybe it’s worth a try to be considered for long acting Opioids. I also have heard that if you have nerve pain and you are unable to take antidepressants or anticonvulsants, then Opioids are worth thinking about for these patients. They usually recommend that when someone is given these meds, they should be willing to start out with low doses and start out very slowly.  Hopefully their pain will be relieved if they can tolerate the side effects. People like me, who suffer from multiple chronic pain issues and horribly nerve pain illnesses, should be able to have access to any kind of treatment that has any possibility of improving their symptoms.

About 3 years ago, I started telling my GP that I wanted to reduce the dosage of the pain medications I’ve been taking since 2005. It seemed to me that no medication should be continually taken without having full benefits. I asked many times and each time he would tell me that I didn’t want to “end up on the couch in my living room again in horrible pain; or be in the hospital bed again, like I’d been the first 3 years following the MVA. He was the Dr. and I was the patient so I relented and just listened to him and trusted him. A person who is “addicted” psychologically does not ask to have their pain meds reduced because they are afraid of feeling “married” to it. I didn’t ever like that feeling of having to take something or else I would get sick or sicker! That frightens me and tapering the meds, is the best and safest way for ME to do it. I don’t suggest it for anyone else. You need to check with your own Dr’s and do what they tell you to do. But since the Dr. who knew me very well, turned out to be a bad man who betrayed me and lied to me….well…now I’m back to not trusting anyone again! I know that I do not “crave” the medication in my mind. Psychological dependance is confused quite often  with serious substance abuse and the literature is quite confusing. The Diagnostic and statistical manual, edition IV, (DSM-IV) defines substance dependance as a more serious form of substance abuse. This more serious kind of substance use is characterized by tolerance, withdrawal, overuse, craving, inability to cut down, and excessive preoccupation with respect to obtaining the substance. But substance abuse is characterized in the DSM-IV by use leading to failure to fulfill roles/responsibilities, use in hazardous situations, legal problems resulting from use and use despite negative consequences.  Other studies of chronic long term opioid therapy found that all patients who developed problems with opioid use had a “PRIOR HISTORY OF SUBSTANCE ABUSE”! (hence…NOT ME!)..

There is a lack of any true quantity of research regarding the data for long term opioid use. Many Dr’s prescribe opiates for their chronic non malignant pain patients. Mostly because the alternative treatments for long term management of pain most often fail!! From my readings and research lately, I have found that the opiates usually work for awhile but not always so great for long term use. Sometimes they seem to work in long term situations but I guess there needs to be more evidence and research on that idea. As for me, I feel like it worked for my pain, since I have so many places with nerve pain and so many issues with long term pain. I think it should’ve been reduced a long time ago, because I feel a difference already. I’ve tapered down to 1/3 already in 3 weeks and now when I take the meds, I can actually feel it working after just a few moments; the break through meds. Before I started tapering, it seemed as though I had a constant ongoing “everywhere” pain that felt firey. I just continued my prescribed regimen because that is what I was told to do and each time I asked to stop and /or reduce the amount or try something else, I was pretty much told to “shut up”. I wish Michigan, the state in which I live, could adapt the state of Washington’s patient assessment and care guidelines for the use of opioids for chronic non-malignant pain. You can find this at: http://www.agencymeddirectorswa.gov/Files/OpioidGdline.pdf.  In short, it explains how It includes limiting the dose and amount prescribed, using urine testing for illicit drug use and treatment compliance and asking about alchohol, tobacco and drug use history prior to starting any opioid treatments.

Everything I’ve learned and from my own experience tells me that there is a low risk of addiction in naive chronic pain patients. Someone like me who has never smoked anything nor been a drinker of alcohol, has a very low risk of addiction. I think it is downright hurtful and abusive in certain ways, to keep medication that can help someone’s pain, away from them. What about Dr’s who withhold opiate anelgesics? The problem again is that we just don’t know how long they are effective? In (Kalso et al, 2004)  it was proven that opiate analgesics  effectiveness can be sustained for up to 8 weeks. The problem is that I don’t find any studies that prove their effectiveness after the 8 weeks time period is finished. Also it was shown with lab animals that dependance and pain can possibly get worse with long term use of opioid analgesics. Another issue is tolerance, though this hasn’t been shown in a clinical setting. Increasing dosage to maintain pain control is very common. Many animals in studies do show tolerance (e.g. see Chan et al, 2007).

Sometimes something called “hyperalgesia”  can develop when long term use of opioids happens. This really can mess up and complicate things for the patient and the Dr as well. This was proven  and there is evidence suggesting that this may happen in pain patients on daily opiate therapy (Cohen et al, 2008).  Opiate drug addicts and true pain patients are very separate sets of people. I never touched drugs or alcohol and I’ve always striven to be a person “on the straight and narrow”. I’ve never had any trouble with addiction and I was tested during my time as a patient at the pain management clinic. I was tested by their Psychologist and Psychiatrist.  Their tests proved exactly the same as what I had always known to be true; that I do not have an addictive personality.  In the clinical studies referred to above proved also that opiate addiction due to appropriate medical management of pain is rare! Doctors have a hard time because they feel that it’s difficult to know who is faking pain just to get a prescription. However, the person who is lying to get the meds is already an addict, therefore the Dr is not creating one!

As I mentioned towards the beginning of my post today, more research is needed to decide which pain patients would benefit from treatment with Opiods.  I feel that anyone who is tested and proven to not have an “addictive personality” and who also has proven to be a true chronic, non malignant pain patient; with real HIGH pain health issues/conditions/diseases should be given a chance. I believe also if a patient is asking their Dr. to reduce their opioids because they are willing to try less, then the Dr. should listen to them. Maybe they will go through some tapering withdrawals, but nothing intolerable hopefully. In my case its not been fun but now I’m at the last third of the tapering process. I CAN do this and when I’m finished then I hope to find some respectable, reputable pain management specialist who will welcome me to their practice and help me stay on a maintenance dose. I’ve already notice and noted that I can now feel my “real” pain in the places where there are real problems. When I take a breakthrough medication, I can now truly feel the pain lessen; where before when I was over medicated, I felt a constant burning, nagging 6-7 out of 10 on the pain scale pretty much constantly. I was afraid to NOT take what my Dr. prescribed, thinking that maybe it would worsen to a 9 out of 10, which I didn’t want to tolerate. I can now feel as I’m tapering down on my own pain medications, that when I “over do” my activities a bit, then my pain goes up. When I’m laying “low”, the pain seems to be held at bay a bit.  This has always been true but when I was on higher dosage and over medicated by my Dr., I felt a constant, more steady nagging “all over” pain. I can feel a distinct difference in my pain now.  I know that I didn’t and don’t have hyperalgesia, because my dosage stopped going up 5 years ago but my pain did not increase until my RSD/CRPS II, spread to “systemic” in 2013, and I acquired Lymph edema in my left arm and pain/swelling in my left chest area as well.  My pain was semi controlled and I could do a little bit more on a good day just as I could do a little bit less or nothing much, on a bad day. But I still kept wanting to lower my dosage.

This has turned into a mess for me and for my life. I’m afraid that I’m going to be in horrible pain for the rest of my life? Please…anyone with any ideas (**other than “detox” for a me, a person with no history of abuse of any kind) on where I can go? What I can do? Please leave kind comments or email me if you like…thank you for reading my long post today. I hope I’ve helped someone today!

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