ASL Cover of “Closer” By The Chainsmokers

ASL Cover of “Closer” By The Chainsmokers

 

I used to be an Interpreter for the Deaf. I worked at a University hospital interpreting for Deaf patients and also I worked at a school for Deaf children in AZ. In 2002, I was in a horrible car accident. A man ran through a red light and I now live with several High pain chronic illnesses (CRPS is just one of them). I also live with the effects of a TBI and was in brain injury rehab for 3 years. I do the best I can now; as I cannot hear the song and lyrics very well together. I do this for entertainment/enjoyment and for fun. I do this to bring myself HOPE on a bad day. I am hearing impaired and I do this for enjoyment and entertainment. I do this for myself as much as I do it for you. I claim no copyright to the song or the band the chainsmokers.

Opioids Kill Pain, Not People

Opioids Kill Pain, Not People

Hello Luvs,

This writing turned into an article for the Health News Magazine that I author for, and have since November 2016! I love it and am enjoying this so much! I wanted to make sure to send you the link to the edited version of my blog post, which is the article of the same name. It is here: http://NationalPainReport.com/Opioids-kill-pain-not-people-8833207.html ….

I wanted to write something to enlighten the non-pain community as well as those who are in pain but are either new to the pain or have not had much of a relationship or experience with Opioids. Opioids can cause “dependence” just the same as many anti-depressants, blood pressure meds and Beta blockers.  Dependence is not the same as addiction and I will try to explain that in this writing. People who take opioids for chronic pain illnesses that carry a # of 43 on the McGill pain scale, for example:  CRPS or Complex Regional pain syndrome (and many others); do not get a “HIGH” from taking them.  When you have very extreme chronic daily pain, the Opioids just relieve the pain and do not give a Euphoric feeling whatsoever.  Of course, I am writing from my own experience and from the experience of being a patient health advocate since 2007 and a patient leader, as well as an administrator for several chronic pain illness groups.

Opioids do not kill people, but they do kill the pain for awhile. If you ask a person with chronic pain, if they enjoy taking these medications; they will all tell you “NO”! We do not like that we need or depend on these meds for relieving our daily high pain. We wish that we did not need the Opioids and we would prefer to just live pain free.  Many people that do not experience daily chronic pain, have the notion that Opioids are killing people.  This may be partially true, but not so, for the true chronic pain patients and the pain community. Those who die from taking Opioids are usually mixing it with other things from the “streets”.  They mix it with Heroin or crack cocaine or other “street” drugs; sometimes alcohol too.  Others, for example, celebrities who have passed away from taking Opioids, have mixed it with other substances. The news shows us that “another celebrity has died from an Opioid overdose”.  That’s not the whole truth, because that person had other substances in their bodies, we would later find out; after getting the coroner’s report.

In my research, I found an article on the website for RSDHOPE.org and it says this: In an article written by WebMD in collaboration with the Cleveland Clinic states, “Some medications used to treat pain can be addictive.Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together.” People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision.” The article goes on to say, “Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time.” You can read the original article in its’ entirety. (this was found on the RSDHOPE.org Website here: @http://www.rsdhope.org/addiction-dependence-or-tolerance-to-opiods.html). In that same article at RSDHOPE.org, they go on to explain that: “Another article, written by Leanna Skarnulis, states, “Chronic pain patients often confuse tolerance with addiction. They become fearful when the dosage of a narcotic has to be increased, but it’s normal for the body to build up tolerance over time, says Simmonds, spokeswoman for the American Cancer Society. “Patients don’t get a high, and they don’t get addicted.

I was researching for this article and I read about Elvis Presley, Prince, Michael Jackson and others who died from what was called  or labeled “Opioid overdose”.  But if you read more and dig deeper, you will find that the larger percentage of these people and others, die because they have mixed a prescription Opioid with other medications, drugs, street drugs and/or alcohol. I’m not saying that nobody died from taking Opioids in an overdose.  I will defend my cause by stating that the every single person that I’ve come across within my own pain community (*which is a large number of people because of my being a patient health advocate, Ambassador for US Pain Foundation, mentor for newly diagnosed CRPS patients and a patient leader for WEGO Health and founder/admin. for 4 different kinds of chronic pain support groups) has told me that they do not take more than what is prescribed, therefore they are not “addicted”.  I will also state from my own experience, that people living with daily high pain illnesses, do not “crave” their pain medication. I have never craved my medicines, nor do I seek them out or think about them every day or continuously.

The chronic pain community has been talking about the Opioids more lately and we have been afraid and worried.  This is happening because there are “people” with power who are trying to take away our small semblance of a “normal” life with lowered amounts of pain. I understand that there are parents who’ve lost children and Children who’ve lost parents due to drug overdoses. I realize that people who are uninformed or misinformed regarding chronic pain; think they are taking on a cause or “helping”others because of their loss. I feel deeply sad for anyone who’s lost someone that they love from a drug overdose or for any reason, for that matter.  It’s a bit similar to what used to happen when we were children in a classroom at school.  The teachers would punish the entire class for something that one child did and he would not confess to doing it.  The entire pain community should not be punished because of the actions of some.

There are some other reasons for The Opioid Debacle that’s happening right now around us.  There are those “persons” who make money off of our chronic pain and suffering.  People who make a fortune doing invasive and dangerous surgeries on the pain community.  Also the many different therapies and treatment modalities that insurance doesn’t cover, for the most part. There are PROP physicians and others who say that Opioids don’t help chronic pain! The latter is an untrue statement because I’m here today as a chronic pain patient who does NOT and has not gone up in dosage in many years. I have experience being with many persons in the chronic pain community who will testify that taking a routine and regular dosage of Opioids, does help relieve their chronic pain.  We are not addicted, we do not seek out or crave the Opioids and we deserve to be able to just “take a pill” that has little or no side effects, for many.

Lastly, I would like to say that there are advocates in physicians and others who truly want to help those with chronic pain.  One of our biggest advocates, is a physician named, Dr. Lynn Webster (www.LynnWbsterMD.com). He is someone who has been trying to help our community. Dr. L. Webster, M.D., has a book out called “The Painful Truth” (www.thepainfultruthbook.com) and now there is a movie  with the same name on PBS also. For anyone who is interested in learning more about chronic pain and how medications like Opioids can help; here is the link to the PBS broadcasting :  The Painful Truth .

**HEY, Please follow me on TWITTTER at these two Handles: @RASEforCRPS and @ Ppl_InPainUnite …(RASE stands for “Research,Awareness,Support and Educate)

     Dear Mr. President 

     Dear Mr. President 

March 12, 2017

President Donald J. TrumpThe White House1600 Pennsylvania AveWashington, DC. 20500

Dear Mr. President,

My name is Suzanne Stewart and I urgently need your attention please, Mr. President. I’m so sorry for all that is happening these days that is making it so difficult for all of us and for you as the President. I know goodness will prevail. I need your help on behalf of millions of real and true Chronic Pain patients. Please don’t stop reading this letter now because of those words. For some reason they seem to make people nervous. Let me explain briefly, what I am asking from you.  Mr. President, so many chronic pain patients in these United States of America are really and truly in horrific pain on a daily basis. I live with a horrible nerve disease called “RSD/CRPS” and aka “Reflex Sympathetic Dystrophy” and “Complex Regional pain Syndrome”. It is #43 on the McGill pain index; only superseded by terminal cancer and about as painful as the amputation of a finger without anesthesia. There are many very real painful illnesses out there and I have several of them, following a car accident in 2002. A man ran through a red light and totaled not only my car but my body as well. I have had 8 surgeries and after the 7th, I was diagnosed with RSD/CRPS. In 2013, I was supposed to have a pacemaker replaced, but instead I ended up with a total pectoral muscle reconstruction surgery. The Dr. tried to head off “full body/systemic” CRPS, but it did not work for me. I now live with full body, systemic, CRPS disseminated and severe. I also have several herniated/bulging cervical and lumbar discs with Degenerative Disc Disease, Arnold Chiari Malformation I, with Chiari migraines and Polyneuropathy in Collagen Vascular Disease (which is equal to Ehler’s Danlos Syndrome type 4-Vascular, or EDS-4) and there’s more but I don’t want to belabor this subject.

There are many Americans who live with daily chronic pain illnesses and we implore you for help. The CDC and DEA and “Big Brother” Pharma companies are trying to “hurt” the American chronic pain people. We need your help and the help of Tom Price, the HHS person, who you chose because he would do a good job, right? Please help us, your pain community to not lose the medications that many need so badly. We seem to be losing our medications because of heroin addicts being “lumped together” with us. Every time a celebrity dies of an overdose, they blame it on the pain meds and not the misuse and abuse of pain medications along with the use of recreational street drugs. You are an NRA spokesperson and you believe in the constitutional right of the “right to bear arms”. Then you need to believe in the right of the established and true chronic pain patients, to have the right to take the appropriate pain medications that have been prescribed diligently by their Physicians and/or Pain Physicians. No Dr. should be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our Physicians are leaving in droves because of all of the “uproar” about an “Opioid epidemic”. Senators, Joe Manchin (D-WV), Amy Klobuchar (D-MN), Angus King (I-ME), Heidi Heitkamp (D-ND), Tammy Baldwin (D-WI), Bill Nelson (D-FL), Chris Murphy (D-CT), Elizabeth Warren, (D-MA), Maggie Hassan (D-NH), Jeanne Shaheen (D-NH) and Richard Blumenthal (D-CT) proposed a “Budgeting for Opioid Addiction Treatment Act” (aka “LifeBoat Act”), to force chronic pain patients pay a tax, called “the Lifeboat tax”. It would have meant that pain patients would have to pay .01 cent for each milligram of Opioid pain medication that they take on a daily basis! This money was then going to be used for addiction treatment centers! This is not right, just as that tax on medical devices was and is completely wrong and punishing people for being ill.
Mr. President, we are not addicts and we are not “addicted” to our medications. We only use them for pain control. If you ask most true chronic pain patients, they would tell you that they hate taking the medications and wish we did not have to depend on it. This is the key word, sir, and that is “dependent”! We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their drugs at any cost and looks forward to taking them because of the “high” they get. As pain patients who take our medications responsibly, we get some kind of relief from the daily chronic pain that we live with. Imagine that just taking a shower, takes so much out of you because of the pain? Just showering and possibly doing our hair and brushing our teeth makes it so that we cannot schedule anything else that day! We are “dependent” yes, but NOT “addicted” to our medications. We need the physician / patient relationship to choose what is necessary and best for our pain control. The P.R.O.P. Dr.’s who are against Opioids and others against them, are just misinformed and some want to make money off of us. Some of those against Opioids for pain control, don’t want us to take them because they own treatment centers. They get money from chronic pain patients who are then treated as “addicts”. Some pain patients go there because its a last resort and nobody will help anymore. So many Dr’s are leaving and afraid because they aren’t able to prescribe anymore and not even for the true persons living with real and true pain on a daily basis.
Mr. President, please help us. I understand there are people who die from overdoses. But those people need help with depression maybe? They are fearful that the life that they have known with a little bit of pain control from the Opioids for years, is going to or has been ripped away from them? People are being told that they will have to go to the Dr or the pharmacy every 5 days in order to get a prescription for pain medications. Well that is just ludicrous because most of us can’t even drive or drive very far. We don’t feel well enough to get out and go to the Dr’s office every 5 days. Would they ask a Diabetic to do that? NO! They would not do that to a High blood pressure patient or a heart patient either. I take Beta Blockers and I cannot go off of them abruptly, or I could die or have a heart attack. People are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and where they are known and believed. But because of this “fake fear” in the people and the government right now, Dr’s are taking away the little bit of life that some have left by taking the pain meds away.
I am an Ambassador for the U.S. Pain Foundation, sir; and I am a patient health advocate. I do public speaking, write for the National Pain Report and I am a patient leader for WEGO health. I am completely disabled and depending on the day, I use a wheelchair, walker, motorized scooter or a cane. I described several of my health issues above, but there are more, in that I had a CVA in 2006 and an M.I. in 2005. My pain is much lessened due to the medication that I take. I have been living with several high chronic pain illnesses since 2002. I’ve tried so many different medications and many other treatment modalities. I also have an Immune deficiency illness that prevents me from being a candidate for a Spinal cord stimulator or a intrathecal pain pump as well. I don’t think anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when a pill with little side effects could help them so much. But you see, the money is in the surgeries and the Spinal cord stimulators and pain pumps. Mr. President, I am imploring you to help me and the 100 million other chronic pain patients in the USA, who are diligent and who take the medications responsibly. Please help us to be allowed to continue our pain medication regiment. The only thing that these proposed strict rules will do; is to turn chronic pain patients to the streets and then many more will die from getting the wrong kind of pain medications mixed with “who knows what”? Its just as the NRA says that the “bad guys will still have guns” if you take the guns away and make them illegal. The good pain patients who are left with no other choice; I feel, will be desperate. I’m begging you sir, please read my letter and please talk to me if you’d like. I’ll do anything to help my fellow pain warriors and myself. We need your help to understand that we are “chronic pain patients” and not “addicts”! We are just real people with true high pain illnesses. Please have Mr. Price to talk to pain patients like me and listen to the U.S. Pain Foundation’s ideas. We believe that something needs to be done. I don’t mind if they make medications that cannot be crushed, melted or changed in any way. That would help to keep the drug addicts from melting or chewing it in order to get high. But please see the difference between pain patients and drug addicts. Help us, the true chronic pain patients not lose our medications that give us some semblance of a life with our families.
Sincerely,
Suzanne Stewart

Ambassador, MI- U.S. Pain Foundation Author/Blogger, Patient Mentor RSDSA, Patient Advocate, Patient Leader WEGO Health

CC: Tom Price, Health and Human Services 200 Independence Ave SW,           Washington, DC. 20201

True Colors-An ASL Cover

True Colors-An ASL Cover

I have done an ASL Cover to the Song “True Colors” from the Orig. Disney Movie “Trolls”. If you haven’t seen it yet, you just must! It is adorable for all ages and has wonderful life lessons in it for all of us to follow. I just loved this movie. The song is sung by Justin Timberlake and Anna Kendrick.  Please Please go to my You Tube Channel . ASLSUZYQ and Subscribe to my channel and feel free to comment on my video and watch other ASL Covers that I have. I do this for fun, entertainment now because I once was an Interpreter for the Deaf and now I have lowered vision and 2 hearing aids for moderate hearing loss. I used to Interpret for Deaf patients at the U of MI hospitals. I also worked as an Interpreter for Deaf children via magnet schools in Livingston County, MI. Please enjoy and Requests welcomed!IMG_0222

 

No Competition, No Winners!

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.

The Pain That Never Ends

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

Illness Doesn’t Equal Lack of Faith

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.