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.

Part of Two Worlds


Hello Luvs,

Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally “medically possible 100% deaf”. I can hear a few various pitches, frequencies and sounds. With my hearing aids in, I can hear a little bit during a “one on one” conversation. But add in background noise and people who mumble or talk very fast; and then it’s nearly impossible. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces of a puzzle & then trying to “fill in the missing pieces”.

In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 3 years. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, it did feel better after the pressure was gone. But each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 7 or 8 years old. They were surgically placed multiple times and for several years.

Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.

I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural hearing loss in both of my ears L>R (but currently (2019), it’s R>L & it’s a mixed hearing loss). Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.

It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.

Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.

The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.

Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!

I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!

I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.

I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.

Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.

After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became more (*I was mild HoH since elementary school) Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.

I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.

Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!

I have a Facebook page at: Link to my ASLSUZYQ Facebook page

I have a Facebook group called “ASLExpress” at:Link to join Facebook group ASL Express

Lastly, I have an ASL group for allowing people to post ASL covers in a safe place, called “ASL Song” at: Link to ASL Song Facebook group

“Silent Impressions Productions” & I’m 2nd left
Me Interpreting at church before MVA
Me Interpreting a Song in “Silent Praise@ group

Me working at Deaf preschool
I was in newspaper when I taught elementary kids

My hearing aids

Walking Through The Day With a Pain Warrior


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This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

 

 

 

 

The Pain That Never Ends


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I married to get out of the house, when I was just 20 years old. That lasted 10 weeks and it was so terrible that I won’t even discuss that time period. Luckily that marriage was annulled and I moved away to another city to work at a school for the Deaf. I lived between my 2 aunts homes and got to work with Deaf children. I loved that job and I was also Interpreting for the Deaf at a great church. I got to participate in 2 drama groups that did sign language or “ASL” to songs and choreographed dance. I had a wonderful time during the year that I lived in Arizona. It was 1982-1983 and I celebrated my 21st birthday there and was part of a church youth group with wonderful friends.
I arrived home from Arizona and later met someone. We dated, got married and we were married for 8 years. We had 2 daughters, a dog and a beautiful home. I won’t belabor the story of how the Marriage ended because people can be hurt still today, from that “story”. I will say that I obtained help from a shelter and the Women’s Resource center. I moved out of our home a few months later when my older daughter finished kindergarten. Their father moved 1800 miles away and rarely saw them. I took care of them all by myself. I was the only person that was always there for them! Even if I had to leave my job in the middle of the day to be there for them and return to work afterwards; I would do that. So much has happened in my life. Most people would think that it’s horrific, but I soldiered on. I was almost completely alone but the three of us had each other. We were very lucky to have received some help from some very good people, churches and counselors.
When my oldest daughter was in 4th grade, I went on field trips and I took every chance possible to help out at the girls’ elementary school. I started a “Sign Language club” at their school, for a group of 4th and 5th graders. I taught 35 children some songs in Sign Language and did that for about 4 or 5 years. I love children and had so much fun interacting with them. I would teach fun songs in Sign Language and at the the end of the year we would have a show for the parents and the rest of the school. The “Silent Impressions Sign Language Club” was after school each Friday. I had that day off from my job and used it for volunteering in the classroom or at school and for teaching the Sign Language club. Towards the end of that year, my daughters’ teacher and I started to discuss meeting up for a coffee. He was a single dad and I was a single mom but we decided not to date until the school year was finished. Once we started dating we found that we were truly “soul-mates” and a little over a year later; we were married in the Wedding Chapel on Valentines day 1997.
One Saturday afternoon during the Summer of 2002, my husband and I were meandering & sipping lemonade at an outdoor Craft fair; while deciding where to go for dinner. The girls were with their friends and so we headed towards our town to a restaurant. As we were driving through a green light, a man ran through the red light and “t-boned” our mini Van with his SUV. I only remember a terrible burning smell after screaming “OH MY GOD”! The “lights went out” and I have vague memories of being in an ambulance and at a hospital and crying due to horrible pain. Luckily my husband was not hurt and a Police officer took him home to get our other car and our kids. I have no memory of the time without him being there with me.
I could not stand or barely move. My husband says that people were leaving the halls because my screams of pain were too hard for them to hear. My case was given to a trauma Dr. and I was admitted to the hospital. After 5 days my husband called my Neurologist (who I knew because of a Long thoracic nerve injury in 1999); and signed me out against medical advice. The weren’t doing anything for me. My husband told them that I was not acting like myself. I wet the bed and could not even stand to go to the bathroom. Instead of diagnosing me correctly with the TBI, that I later was finally diagnosed with; they sent up a Psych consult. They told us that I was “acting that way due to being abused”. My husband stayed with me the whole time and it was still a horrible experience. I left the hospital and that’s when questions started being answered. My then, G.P. and Neurologist helped get me the testing that was needed. I was found to have 2 torn rotator cuffs and multiple herniated/bulging lumbar and cervical discs. I had a torn Meniscus, sprained ankles and wrist. Also, I was diagnosed with Chiari I malformation, which I was born with but until the MVA, it was “sleeping”. Well, it awakened and I started having the worst migraines in the back of my neck and head. I could not hold my head by myself. My husband had to put me in a wheelchair with a yardstick behind my back and head with a pillow holding up my head. I couldn’t dress or undress myself or even go to the restroom alone. I couldn’t cut my own food or sleep in my bed. The insurance company sent a hospital bed for me to use or I slept in our recliner. I was in the most pain I’d ever known, outside of childbirth. The Physical Medicine & Rehab Dr. sent me for Neuro-Psych testing and I was found to have a TBI or “Traumatic Brain Injury”. The report said that my “short term memory was in the toilet”!! I went to a TBI Rehabilitation Center, daily from 9:00 am – 3:00 pm for 3 years. I had several different areas of nerve damage. It was discovered that I have a convergence insufficiency in my eyes and Moderate hearing loss in my ears. I needed Prisms on my glasses and 2 hearing aids. As I continued to faint nobody would help me or even listen. My husband knew something else was wrong and so did I. But to get Dr’s to listen when things are complicated and when so many things wrong; is very difficult. I saw a Neuro-Cardiologist because the TBI center sent me to him finally because of the fainting. I was diagnosed with Dysautonomia and POTS. I had Coronary spasms and a permanent pacemaker was placed. I ended up having 8 surgeries! I had visited so many shoulder Dr’s but none of them would listen to my issue regarding a “nerve zing” that went down my left arm from my left shoulder. One Dr. said to me “What part of “I can’t fix it, don’t you understand? Is it your brain injury?” OMG!! He was horrible and while I was walking out with my walker; the girls in his office looked horrified by what their boss had just said to me. I had several awful experiences with physicians, until one finally listened to me. It only takes ONE Dr. Folks! One to listen to you and help you. I ended up finding out that during that entire year that I was visiting shoulder Doctors; my biceps tendon had ruptured during the accident and it had grown onto the bone incorrectly. I had to have open shoulder surgery! They had to un-attach my Biceps tendon and reattach it with 2 screws. It was very painful.
I went through so much! Later, I had my 7th surgery, which was in 2007 on my right foot. It was the start of another nightmare! I was told that it would be a 30 minute surgery. I had been put on Coumadin, a blood thinner; due to having a heart attack in 2005. Following that Heart attack, I was diagnosed with Atrial fibrillation. After that, in 2006, I suffered a CVA or stroke. The surgeon didn’t want to take me off of the Coumadin and so she put a blood pressure cuff around my ankle to stop blood flow to the right foot. The surgeon came out and told my husband after 90 minutes, that “once inside, the foot was much more gnarly” than she originally had thought. It took much longer than expected and there was no blood going into my foot during that time. Five days after my surgery, I was hobbling along in our kitchen and suddenly a big golfball sized lump popped out of my ankle and was purple, black and blue instantly! It felt like knives sticking in my ankle and I was writhing in pain. My husband took me to the E. R. but nobody wanted to help me. I sat there crying in so much pain while they “were waiting for another ambulance to come for the girl in the next bed who was “stable”. I was crushed again that no one would help me. We paged the Dr. who did the surgery and left the E. R.! She told us to meet her at the surgery center the next morning. I had to make it through the night like that! It was so much pain! She said that the “synovial joint sac had burst over my ankle joint “ and that is why it was so painful! She gave me Fentanyl Lollipops and told me to take them until the swelling could go down. That would take time & then the pain would lessen, slowly. I went for my 6 week check up and told her that the pain was worse than before I started. She told me that I had “a little RSD” and gave me some “Lyrica” I waited and things got worse and the Lyrica was horrible with nasty side effects. It did nothing but make things worse for me. I went to another Orthopedic Dr. and got a 2nd opinion. He walked by the room and said that my foot looked like “classic RSD” and he sent me directly to a pain clinic.
Prior to that MVA, I had only known the pain of abuse, and non physical types of pain. Childbirth was painful because I had 2 C-sections. The second time was a C-section after 43 hours of labor! But it was worth it because I got to have a beautiful baby both times! Also, there was an end to the pain of labor! There is no end to my current pain. The CRPS or “RSD” has gone systemic or full body since my 2nd pacemaker placement in 2013. Everything that could go wrong, has gone wrong. Mostly, because Dr.’s would not listen or had a preconceived notion of me and who I am. But I am strong! I am a survivor and it’s time to listen to me! I’m fighting for the pain patients and I won’t give up.img_3995

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

Doctors Are Only Human….


I have been to too many Dr’s since my auto accident of 2002. I have had my share of good and kind, helpful men of medicine. But then I also have had more than my fair share of mean and inhumane and insensitive medical and osteopathic physicians. I suffered a brain injury in that car accident and had to go into brain injury rehab for 3 years following. I have a terrible short term memory, when I once had memorized my full address book! I had a photographic memory in which I could look at something and study it as if studying for a test. Later I could recall that image in my mind. Now I can’t do either! My cerebellum is injured and will not get better. I love to write and as for reading, I have to read, re-read and re-read. I then get frustrated and go back to re-read again and then maybe even another time. Finally, I may retain the “idea” of something in a book or an article, but that’s as much as I can retain now for later recall. I am only telling you that because I do remember how awful I felt after leaving a shoulder orthopedic Dr’s office in 2003, after that MVA. I had been to visit several shoulder Doc’s by then…and knee Dr’s and heart Dr’s and so on. I had yet to visit the Cleveland clinic but that was to come later on. This shoulder Dr. said to me “What part of “I CAN’T HELP YOU, DONT YOU UNDERSTAND? Is it the brain injury or what?” Oh My Gosh! I was mortified as was his office staff. I left in tears with the man from the driving company, who transported me that day, also flabbergasted by this Dr’s words. That man was definitely NOT a Healer. I’ve had many more of those awful things happen to me in many different Dr’s offices. But I didn’t give up or lose hope. I kept going until I finally found someone to listen to me. Someone who didn’t want to blame everything on the abuse issues I suffer. I found a shoulder Dr. who sent me to the Cleveland clinic and they agreed with his diagnosis. They had thought they might do a “cadaver muscle / nerve transfer” surgery. But then they felt that I had too many other pain areas and that would be a huge, major surgery along with only fixing one small pain issue. I was sent back to the kind shoulder Dr. in Michigan, Dr. Jeff and he listened to me and touched my shoulder in a certain way. He knew right away that I had besides 2 torn rotator cuffs, a ruptured biceps tendon. It had ruptured a year earlier in that car accident but nobody would listen to me. I had so much pain and so many issues that I was “poo poo’ed” by many health professionals; until I finally found a great team that has been helping me. Dr Jeff did a surgery to detach the ruptured biceps tendon from the bone and reattach it with 2 screws. It fixed the nerve “zings” and though it was a painful surgery after 2 frozen shoulders/adhesive capsulitis for a year and 2 torn rotator cuffs. Soooooooo…….
I just happened to be on “LinkedIn” very very early today. I could not sleep. Something was drawing me to this place I hardly ever visit. I mean…I’m in pain…I am unable to work. I do what I can to try and help others and selfishly that makes me feel just a little bit better. I am in pain 24/7 and to others, I “look good”. People tell me that I “look fine” and that I “look young” and that does feel good. Though at times it makes me feel less cared about and less listened to. I feel judged sometimes and if I complain too much, people don’t want to be around me. Even if I don’t really complain at all, God forbid that I answer that question that just about everyone asks when they run into us someplace “How are you?” Well, my friends….you are damned if you answer that and damned if you don’t answer it. You may talk too long, too deep, or not enough. You just cannot please everyone so please …please yourself. Say what you need to say and to only those that you trust. No sense going into a long history of your issues with people who don’t care or who may try to hurt you with it later on, right? I mean, even those that we love or those that we hope love us back, they get tired too. I can’t say that I blame them as I grew up with an ill mother. She was in and out of the hospitals all of my life. The ambulances came into our house since I was a tot in the ‘onsie’ pJ’s, rubbing my eyes in the middle of the night when strangers with gurneys were taking my mommy away and telling me to “get out of the way”.
So this morning I was reading and I found this blog here on WordPress . It is called “Musings of The Distractible Mind” by Dr Rob Lamberts, LLC. It was an awesome article or post. I subscribed to his blog and now I want to share it with you. I give him all credits for this post as I have copied and pasted what he wrote for you to read because it’s awesome and I think it will help my readers. Mostly because many of my readers are chronic pain patients. Some with RSD/CRPS, like me; and others with various other pain issues and a wide range of medical problems. I admire this Dr’s writings and I am not copying his work as my own, only posting it here to share it with you because it’s awesome. I give you his name and the name of his blog and the name of this blog post. I pray that he is flattered, but if he does get upset, I will do whatever he wishes. I only hope that it will reach and help many people. Here is HIS blog post from July 2014:

Dr’s Are Not Healers

It’s a seductive idea. We doctors possess knowledge and experience which can not only help people, but can save their lives. We get opportunities to be the right person at the right time to offer the right help that makes all of the difference. It’s one of the greatest things about our profession. It’s also one of its greatest traps.

I’ve heard many doctors refer to themselves as “healers,” as if we have some special power to bring about healing in our patients. This idea confers some sort of a higher status and originates, to some, from a “higher calling” to a more noble life. Again, this is a logical step, in that we have opportunities on a regular basis to help and even save the lives of people. It’s natural to believe that somehow the healing power comes from our touch, or even from our knowledge.

It doesn’t. I am not a healer.

Healing is what the patient does, not the doctor. As a physician, I am certainly one who can help the patient find a faster road to healing, but I don’t heal. I help.

Why am I taking the time to talk about this? Why get stressed out over whether I am a helper or a healer? I think that the belief in doctors as healers causes significant harm to both doctors and patients, and that getting a better perspective about the roles of each will greatly improve the care given. Here’s why I believe this is a topic that needs addressing:

1. DOCTORS OFTEN FAIL AT HEALING (AND WILL ALWAYS ULTIMATELY FAIL)

There are many patient problems that do not get better, despite my best efforts. There are countless pains I can’t remove, and many problems I do not solve. Even when I succeed, the success is always temporary, as a new problem will eventually come back. And if healing is our ultimate goal as physicians, we all are total failures, as all of our patients eventually die. If healing is held as our goal, we fight a losing battle. We are the soldiers in the Alamo, offering impotent resistance to an overwhelming force.

If I believe in myself as a healer, I will face constant disappointment and defeat.

2. WHEN HEALING OCCURS, IT IS OFTEN INDEPENDENT OF DOCTORS

My patient may follow my advice and not get better, or may disregard what I say and recover from their problem. My direction is imprecise and imperfect, based on my knowledge and experience along with what I believe to be happening with the patient. But my experience and knowledge may not be right, and my interpretation of what is happening with the patient may be inaccurate. Healing is something that happens in the patient’s body. It’s when they get better, whether or not I am involved in the process.

Belief in myself as a healer is based on a falsely high opinion of my knowledge and abilities.

3. PATIENTS WHO SEE DOCTORS AS HEALERS WILL EXPECT TOO MUCH

I’ve seen it. I’ve heard people’s frustration when I’ve told them I can’t fix their problem or remove their pain. They feel like they shouldn’t have to hurt, or that if there is something wrong it’s because I’ve missed something. These are the folks who buy the “miracle” cures pandered by Dr. Oz and other profiteers. They hear the promises of health and wellness from the media and are disappointed when we can’t offer the same.

By believing I am a healer, my patients will eventually be frustrated and disappointed.

4. DOCTORS WHO TRY TO BE HEALERS DO HARM TO THEIR PATIENTS

The pressure to find the “magic bullet,” or the unifying diagnosis leads many doctors to practice bad medicine. This is a pressure we all feel when faced with the powerless feeling some patients bring. This leads to the ordering of unnecessary tests, performing of unnecessary procedures, and prescription of medications that should not be given. I believe this is what drives many doctors to overly-prescribe narcotic pain medications and other addictive drugs. We don’t want to stand helpless; we want to do something.

To protect my role as a healer, I am drawn away from my training and toward the task of finding a miracle. In doing this I can cause significant harm.

5. TO PROTECT THEIR STATUS AS HEALERS, DOCTORS WILL OPPOSE ANY OTHER PERCEIVED COMPETITION

Doctors in the past have been held with reverence by the general public. We possessed that “secret knowledge” that others didn’t have access to, knowledge that fueled our healing power. Now everyone has access not only to all of the knowledge we have, but also to others who offer alternatives. This causes many doctors to aggressively discourage patients to research their own problems and to attack alternative providers. In defending their turf, however, they are giving patients an ultimatum: us or them. More and more patients are choosing “them” because of this and are rejecting what we offer.

By clinging to our power as healers, doctors have greatly harmed people’s trust in our profession.

So what’s the alternative? Does it really make a difference what we call ourselves as long as we practice medicine? I think it does. Now that I’ve got time to choose the best way to practice, I’ve seen that there is a much better alternative to being a healer: being a helper.

Yeah, that sounds all dull and boring, I know, but it is not only more realistic, it is a much better way to practice medicine. Here’s why:

1. BY BEING A HELPER, I ALWAYS CAN SUCCEED

I may not be able to fix someone’s pain, but I can reduce it or can help them get through it. Every visit is an opportunity to help someone, and once I have helped them I’ve done something that can’t be taken away. I don’t have to see disease as a foe to be defeated, but as an opportunity to give to my patient from my experience and knowledge. Even when patients ultimately succumb to death, I have many opportunities to help them do so with peace.

2. BEING A HELPER KEEPS MY PRIORITIES STRAIGHT

I don’t have some crazy idea that I have special powers. I don’t believe that I’ve been “called” or “chosen” to do magic. I just help people. My focus isn’t on me (as if my care was not a performance), but on the person I am helping.

3. BEING A HELPER KEEPS EXPECTATIONS REALISTIC

If my patients see me as a helper, not a healer, they will listen to my advice with different ears. I am standing beside them, not above them. They are far more likely to listen to me when I am offering help, not pronouncing my wisdom.

4. HELPING MEANS DOING NO HARM

The temptation to offer more tests, more procedures, or dangerous drugs becomes much smaller when I take the role of helper over that of healer. I don’t see a need to prove myself, and will consider the harm of actions much more closely. I won’t over-prescribe pain medications because I will see how it harms my patients in the end.

5. BEING A HELPER LETS ME EXIST IN THE INFORMATION AGE

Like it or not, I am compared to the homeopaths, the herbalists, the chiropractors, and the doctors on TV. When people embrace alternatives to the care I give, they are not necessarily rejecting me; they are seeking what they are when they come to me: to feel better and to lessen their fears about the future. If the help I offer is held next to the miracles promised by others, I think I will win. If patients are helped by others, though, then I should be glad for my patients, not upset about the success of my “rivals.”

We call what we do “health care,” which implies a relationship built for the sake of a person’s health. I believe the best way to accomplish this is to have a realistic view of who we are and what we do. I am not a healer. When I try to be one, I always fail and am always disappointed. I am a helper, and in taking that role I can always have opportunities to succeed.

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