Please Help This Blog Win?


Hello Luvs!

This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!

 Here’s the link:

https://awards.wegohealth.com/nominees/562

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.

 

 

 

 

What You See Is Not What You Get!


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Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain.  Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day.  Some think we are lazy, anti-social or just rude.  We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients.  We must grieve our losses and find new hopes and dreams.  This is the price that we pay for living with chronic pain 24/7/365.

I am still “me” underneath the chronic fatigue and pain.  I still want to talk with you and hear about your day, family and dreams.  In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world.  Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else.  I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere.  Sometimes even sitting on the floor with them.  You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends.  You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?”  If you think like that, I can’t blame you because I once thought those same misinformed thoughts.  What you don’t see, is how I get to the floor or how long I am actually down there.  You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor.  You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm.  You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night.  Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever.  Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day.  Often I fight with myself about going to sleep at night.  Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours?  If I sleep more than 2 or 3 hours, I will awaken and cry.  Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry.  It’ a routine that we have, you know?  My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights.  I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum.  But even to him, my pain is not invisible.  He knows the grimace of  CRPS and the fidgeting of the intensifying pain on an outing.  He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”.  I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment.  I cannot commit to babysitting for the little ones under school age for a week.  I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become.  I’m probably not always much fun to hang out with, but I’m still “me” inside.  Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt.  Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed.  I’ve had nasty notes put on my windshield, that would make anyone cry.  One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house.  I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror.  But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day.  The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow.  Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”.  I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends.  Though I may “do” these things; I definitely know that I will “pay” for it later.  I will rest for days in between and sometimes weeks.  But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best.  Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating.  I’m doing my best to cope and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.

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No Competition, No Winners!


We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is “YOUR pain” then it IS “YOUR” WORST.  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.
Consider Brian Greene’s idea, as he writes about the string theory in clear English : He points out that, “in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today. For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy, or understanding. One person could feel that their situation is the very bottom of the “pit”. The true “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of the use of his legs; to him this is the worst thing that he could imagine. For another pain patient, or an RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine because RSD/CRPS is #43, which is so very high on the McGill pain scale. She may scared because she is so young and has her whole life ahead. For her, this disease is taking so much; it is a thief of sorts! She could lose so many possibilities in life.  Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience true love or the dream of being a mother and holding that baby for the first time? Maybe the dream is something different but what if they don’t ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder, the pain gets worse.  It even gets more difficult to find things that make you smile again.

Today it feels to me as though life for patients with chronic pain has become much more challenging. We have to worry about going to different specialists and having a legitimate “Pain Dr.” now instead of just going to our General Practitioners or Primary Care Docs. We must have and visit a Pain Dr. every month or 2 months, if we are on any kind of Opioids. Today we must do urine tests, the million questions (yes, I’m exaggerating), the signature or the signing of a contract to prove that we will not seek out any other Dr. or even get any other medications for pain from any of our other Physicians. Therefore, if we have a surgery, our pain meds must be authorized by our current Pain Physician, before we can get them or take them! The new “CMS strategy for use/misuse of Opioids” is happening as I write this article . Let me explain.  This is the Centers for Medicare and Medicaid Services. They intend to curb opioid misuse and abuse. But in the meantime they could cause needless suffering to many of our most impoverished and elderly persons in pain. There were posts made by me and Letters sent out by the U.S. Pain Foundation & RSDSA, regarding this. There were tweets, posts, letters etc. going around to get emails out by Friday, March 4, 2017;  to help change some of this strategy before the deadline at midnight Friday. The new Strategy doesn’t go into effect until April 7th, 2017, but we needed many emails to go out.  We needed these emails to help fix what may be a problem for many chronic pain sufferers who rely on Opioids for pain relief.  (*For more information visit: The U.S. Pain eNewsletter, Feb 1, 2017 “CMS publishes new strategy to combat opioid misuse”)!  There are obstacles coming toward us from all directions it seems right now. There’s also the way that Pharmacists can be “the Dr.’s” now and they, along with our insurance companies, can override what our own physicians direct us to take for pain medications. Things are changing and getting more difficult for many persons living with high pain illnesses. I have had people come to me in the groups that I administrate. They have asked me “What can I do? The pharmacy wants me to come back every 5 days to get Opioid pain meds that I’ve been on for years? I cannot drive and it’s an hour away from my house! What can I do?” I feel terrible because I can’t “fix” it for them. I’m writing letters, tweeting & emailing, but no one is listening to me either; not yet. I don’t mind if they change the way the medications are made, such as changing it so they cannot be crushed, broken or changed in any way into another form.  That’s fine with me because I am a legitimate pain patient, who takes my pain medication responsibly at the right times and on the correct dates. But God forbid if you do anything different or wrong! I was questioned because my pharmacy took 6 days to get my medication in!  My Dr. wanted to know why “I waited 6 days to get my pain medication”. I felt like a criminal or like a scared child! This was no fault of my own and in fact, my husband tried to check around but nobody else had my medication in during those dates either. I was punished because I’m the one who started getting very ill for those 5 days! I had to go through that because even though I go to the same pharmacy monthly and for the same medications; they didn’t have my specific  medications that month! When I returned to the Pain Dr. appointment, of course he wanted to know why there was a “lag” in time for picking up my meds. It’s just getting harder, more scary and more confusing. I’m tired and I can see why people feel like giving up sometimes. But we cannot give up! I will not ever give up!  I have to keep on fighting for my rights and for all of our rights!

After my heart surgery in February, 2013; I found out that my RSD/CRPS had traveled to my heart as well as my whole left side. I have so much pain in my neck, knees, lower back, hands, feet, arms, legs etc, from several of chronic pain illnesses or issues. At times, I’m afraid, sad and I get lonely too. But I know that this is only “MY” worst, not anyone elses. I only truly know my own private pain. We all have our own health and pain issues that are specific to each of us. While I can’t take the pain “journey” for you, I can go through it “with” you in a personal way. I can be your friend, listen to your heart and because of computers, I can virtually reach out to you via my groups, my blog and even articles.

Every one of us has real fears, anxieties and true pain.  I recently read a story about a poor woman in terrible pain with great fear. I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I read about another, younger woman in the same kind of horrible pain. In both of their personal stories, deep fears and pain came through. The younger woman feels that she has so much to lose, as she hasn’t even started her life yet. Some of us have already had our children and we’ve had “real” jobs or a career for a while. We may have even been through some good &/ or exciting adventures prior to becoming chronically ill? Maybe we’ve done some fun things in our lives or accomplished a goal? Some of the younger people living wth chronic pain have not been able to achieve any of those things, not yet, anyway. What I see through my patient advocacy work with chronic pain and Invisible Illness; is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the person worse off”. We each may feel that “it’s not fair”  or that our pain is “the worst”.  But it is our own personal worst; which is different for every individual. When I think of pain in this way, I realize that we all have essentially the same inner feelings. If I can stop thinking of my own situation and my pain, and step back for a moment; I’m better able to  empathize with others who live with pain. I know that many of us share the same inner feelings of solitude with our illnesses at times.  We  cannot give up on ourselves or each other. We must not stop trying to fight for a life that we each deserve.

Illness Doesn’t Equal Lack of Faith


 

I have heard  that my tragedies, illnesses, abuse etc. are cast upon me because maybe I am not virtuous enough?  I’ve even heard that maybe I am cursed because I do not have enough faith?  A friend of mine had someone in a local market say that they were going to “cast away the devil in her” because she carries a cane. I have had people say that they want to “lay hands upon me and pray upon me, because I am afflicted”, they feel that their prayers will “cast out evil spirits, or evilness that has caused my afflictions”.  There was  another who  told me that I don’t “have enough God in my life” and therefore I have “so many tragedies” and it is because I “have not forgiven my abusers in this life”…..Sometimes I feel that over zealous, “fundamentalists”, who are excited about God’s miracles, try to “play God” in peoples lives. For instance, I heard about an 18 year old girl who went to a Christian camp and was told that her younger brother need not have died from Cancer, if only the family had more faith! WHAT?  You NEVER know who is going to be stricken with an affliction, an illness, disease or grief.  Put yourself in their shoes and think about what you say.  I am a “Chemo Angel”.  I get assigned a person who’s going through chemo therapy and I send them small gifts & cards of cheer. Right now I have a small, 3 year old girl, with “Langerhans cell Histiocytosis (LCH) “, a form of childhood cancer. Could anyone say that she is ill because she doesn’t have enough Faith or that she’s done something to wrong God and he is “disappointed” in her? Can you say that she has had cancer for 3 out of her 4 years of life, because her family doesn’t have enough faith? NO, that would be cruel and judgemental!

First of all, none of the statements about “illness being due to a lack of Faith”, are accurate. Look at Job and all that he went through!  Job was persecuted because of his faith in God.  Job was given an “affliction”, not because he was “cursed” and certainly not by his own fault.  Three of Job’s friends came to comfort him at the beginning of his worst pain and loss! They were sure that Job was sick and suffering because of the sins he had committed during his life. They told him that “righteous people don’t suffer”. Job always continued to say that he had done nothing sinful or wrong.  In the Bible it does not say that a lack of healing is equal to a lack of faith! God can choose not to heal the faithful, but it is not connected to a lack of faith.

It is cruel, unloving, unkind and just wrong, to say that someone has a lack of faith and is ill, or stricken with loss and tragedy in life because they don’t have enough prayer, faith or enough love of Jesus Christ.  To accost anyone in such a judgemental way does not help but only makes them feel marginalized and more alone.  There are many different faiths in our society. Each Religion has its own set of beliefs, rules and rituals. I’m not here to judge any of these Faiths or  beliefs, but I am here to say that nobody is sick because of their belief system or lack of faith.  People don’t live with chronic pain day in and day out due to any Religious affiliations or lack thereof. We don’t use a cane, a wheelchair or a walker because we do not pray enough.  It does not help a person with chronic pain and illness, to approach them and say any of the words that I’ve stated above. If you choose to pray for someone, then you can do that. But don’t try to push guilt and more pain onto anyone who’s already suffering. That doesn’t help, it only hurts and makes things much worse. Please try to remember to treat others as you would wish to be treated.

If The Appt. Is Not Going Your Way, Be On Your Way!


Are your medical conditions/illnesses very complicated? Do you have more than the average person’s share of visit’s to medical specialists’? If you are anything like me, with a variety of high pain illnesses, then the answer to these questions is a definite “YES”.  Most of us who are “complicated cases” have had experiences that most healthy people wouldn’t be able to fathom. It feels as though I’ve been treated with less respect, since I’ve become a chronic pain patient. I know this because I was once a healthy person. I was listened to and given treatments or tests to find answers.  I went to a specialist several years ago, who should have known what “RSD/CRPS” is all about. A Dr. who should have known what the letters represent.  He took my husband and I into his office and sat us down in small chairs in front of his huge desk.  He barely glanced at the packet of information that I’d given to him. I bring it to each new Dr. appointment. The idea is to make it easier for them and for me. I don’t have to continuously re-write answers on every new patient questionnaire. The physician can flip through very clear descriptions of my medical history. This Dr. looked down at the packet of information for just a couple of short seconds. He looked up at me and said “So what is R.D.S.”?  Really…. What is “R.D.S.”?  I looked at my husband, gave him the signal and we got up and left.  But not before I explained to that Dr. that “It is not called R.D.S., it is R.S.D. and also known as Reflex Sympathetic Dystrophy and/or Complex Regional Pain Syndrome”.

I went to another specialist who told me that even though I have legitimate high pain illnesses, including systemic CRPS, my “pain meds are way out of his league”, and “there is no reason for me to do P.T. or O.T.” Then he told me if I “wanted a Cortisone injection I could have one”, but otherwise nothing he could do because “everyone over 50 has a torn meniscus”.  It was so strange because the first few times I’d seen this Dr., it was right after my car accident. He did the appropriate tests and then he did surgery on my 2 torn meniscus’. But some time had passed and now I was a “chronic pain patient” with several illnesses. I felt like a Pariah, as if now I was not to be taken seriously. Next, he entered the room with a large needle. I knew what it was because I’d already had Cortisone injections to my knees s/p my MVA in 2002. I started to cry.  I’d done this 7 times before, but never with a diagnosis of “severe full body/systemic CRPS”. I’d always been stoic and therefore felt respected by this particular specialist. He told me “I’ll come back when you’re not hysterical anymore”.  I told him that injections can make CRPS worse. In between tears I reminded him that it hurt me very much to even blow air on or touch my knee.  I just couldn’t imagine that kind of injection with this kind of pain.  He left the room and came back a few minutes later.  I was afraid that he wouldn’t help me again if I didn’t comply.  I should have listened to my heart. But fear of a person in a position of “power” over me (or so I felt at the time), allowed me to let him hurt me even more. He had the nurse spray the Lidocaine skin numbing spray, continuously, as he put the Cortisone injection into my already burning, aching, freezing, sensitive left knee. In the end, my pain worsened and the swelling was more than when I started.

Another series of unfortunate events was when I visited several specialists for my shoulder injuries after the car accident. I kept getting told that I had a “torn Rotator cuff” time after time. But I knew that something else had to be wrong because they were saying that I had a torn Rotator cuff in both shoulders. But my left arm had a nerve pain that went down my inner arm whenever I moved a certain way. I went through this pain for over a year and through at least 5 physicians of the same specialty. I didn’t give up, not even after one of the Dr’s said to me “What part of -“I can’t fix it, don’t you understand? Is it your Brain injury?” I quickly left in tears that day (*because I do have a TBI from the MVA)  and never looked back. I finally found a Dr. who listened to me and I was finally diagnosed with a ruptured biceps tendon, that required surgery with 2 screws to repair it. Someone finally listened to me and my inner feelings were correct.

Several similar  incidents have happened to me and I know they’ve happened to many of you. I’d like to share one more experience; the most dangerous one for me. There was a time when I was passing out again and again. I was vomiting from all of the different medications they’d been giving me to “help” with the various pains s/p the MVA. I was in a “Six months and out” rehabilitation center. Meaning whether you get better or not, you are “kicked out after 6 months”. It was a terrible program and it is a story for another day. But what they did to me was unforgivable. Nobody was listening and no one was helping me. They forced me to swim in a pool & get dressed when I could barely button or unbutton anything for myself. They tried to blame it all on the fact that “I’d been abused”. They truly thought I was “faking” or manufacturing the fainting spells! This was the one and only time I’ve ever been accused of anything like that. They strapped onto an exercise bike while I was suffering from 2 torn rotator cuffs & 2 torn meniscus’. I tried to yell out to two physical therapists who were talking to each other.  I yelled to them that I felt faint and thought I might pass out. I did faint while still strapped onto that bike. They had to call an ambulance and as I lay there waiting, there was fear in their faces. A shakiness in their voices as they told me to “lie very still”. My heart rate was only 24 bpm and my blood pressure was only 70/40. I was later told that I could have had a stroke with my stats this low. I was hospitalized and that’s when I received my first permanent dual chamber pacemaker. I was watched all night and then diagnosed with “Sick Sinus Syndrome”, a bradycardia/tachycardia arrythmia in my heart. I was also diagnosed with Prinzmetal Angina or Cornonary spasms, Long QT syndrome, Atrial fibrillation and more. After my recovery, I found a great specialist in Autonomic system failure, POTS, pacemakers and EPS. I’ve been treated by him ever since 2003. He is the best Dr. I’ve ever known and I feel very lucky to have him.

But do you see how we are not listened to or believed at times? We are sometimes not taken seriously because we are “too complicated” or just because we have many illnesses.  Some Dr’s don’t want to get involved in more than earaches and sore throats. Things they can “fix”. They can’t “fix” us and so some don’t want us as patients. Many pain patients have been through bad experiences such as car accidents etc. We deserve to be respected the same as anyone else, if not, just a bit more!

If you go to a Dr. and:

  • he/she stands by the door and cannot wait for you to finish speaking, before telling you “Ok, we’ll see you in 6 months, nice to meet you”.
  • If you go to a physician who acts like you have “too many things wrong with you”.
  • If you can tell that they think you are just too complicated and they don’t want to be involved.
  • If you bring your records and all of your information and they go against your other physicians diagnosis’
  • If you get put down, made fun of or called names
  • If the Physician doesn’t have a clue about your illness(es), for ex: “RDS or RSD”
  • If They want to ignore your other Dr’s treatments and start all over again
  • If they act like you’re just too much trouble and they don’t want to be bothered

LEAVE….DO NOT PASS GO! Don’t feel that you have to finish your appointment! Many times I give my husband our secret “nod” and we just leave before the appointment is over. There’s no reason that you need to stay anyplace that you do not feel comfortable. You don’t owe any Physician your time or money, if they aren’t treating you respectfully. Remember that you’re paying for their services.  If you aren’t being listened to or taken seriously, please be on your way. It doesn’t matter how many Dr’s you visit until you find the one that finally “clicks”. Don’t give up; there will be one that finally “gets it” and understands your issues. There will be that one to finally help you

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From Interpreter for The Deaf To Hearing Impaired, in 10 Seconds!


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Hello Luvs,

Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved first attempt and that doesn’t happen often. When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years.  We don’t want her to have to tell her story to even one more person.”  I was approved and then things got medically worse from there.  In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light.  Within seconds, our lives changed forever!

I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams. I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation.  Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries.  I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction.  I endured many hours of MRI’s and other more invasive tests. After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker.  As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.

In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners. Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it!  After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic.  I had first gone to the pain clinic for:  cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more. The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.

Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were:  “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more.  Nothing has improved very much, in those areas since that time.  As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now.  I cannot remember movies and can see the same movie several times.  If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told.  I feel very bad when I meet new friends, especially online “friends”.  When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report!  I have recently been diagnosed with Gastroparesis and you can’t see it!  Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”.  It is what’s happening on the inside, that is important.

The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”.  Since then,  it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting.  I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision,  extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.

I went to University and graduated with honors in Sign Language Studies/Interpreting.  I worked for a local school district’s Hearing impaired program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hearing Impaired person  with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data.  Now I depend on my smart phone, using:  Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.

I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!!  Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.