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.

How Far I’ll Go- ASL COVER 

How Far I’ll Go- ASL COVER 

This is the ASL version or cover of the song from “Moana”! From the original Disney movie, I’m here doing American Sign Language to the song “How Far I’ll Go”? I claim no copyrights to this song, the singer or the lyrics. I do these mostly to cheer people in pain.

I’m a chronic pain patient and also live with effects of a TBI & multiple chronic pain illnesses. I’m an Ambassador for the U.S. Pain Foundation. I just try to cheer up people and also myself because ASL is such an emotional language.

With Gratitude From A Pain Ambassador

With Gratitude From A Pain Ambassador

photo-feb-03-7-36-40-amphoto-feb-06-11-05-11-pmphoto-feb-03-7-24-16-am-1

Hello Luvs,

I have an exciting story to tell you. So here we go:

As I sat in my “Lazy Boy”chair with a pillow under my knees and a soft blanket over my body, I flipped through my smartphone. I was checking my email on a cold Winter’s night and suddenly I was filled with a feeling of friendship and a special kind of love and appreciation. I received an email stating that I was “nominated by a group of my peers, for the U.S. Pain Foundation’s 2016, Joselynn Badman, Pain Ambassador of the Year Award”! I was surprised, happy and filled with a feeling of being appreciated. No matter if I win or not, I thought; how nice was it to be nominated by my peers.

I don’t participate in competitions or contests where I have to ask people to vote for me. I had at one time done that, in the beginning; several years ago.  But it didn’t give me a good feeling inside. It felt like a popularity contest. It felt as though others might think that I was doing good things in order to get something.  This was a nomination that i had known nothing about and didn’t ask anyone for anything. It was awesome to be nominated.

I filled out the questionnaire that I received from the U.S. Pain Foundation and waited for the results to be announced in the New Year of 2017. Then one day in January, I opened up an email message from my dear friend, Ellen Lennox-Smith; in which she was congratulating me on “winning the Joselynn Badman Ambassador of the Year Award” for 2016.  I had no idea and I got so excited that I think I would have jumped up and down if I could have! My husband was sitting next to me and I told him about it. He was so happy and then we furiously looked to find out more information. I hadn’t read my earlier email yet and there inside of an email from earlier in the day, was the U.S. Pain Foundation’s Monthly Newsletter. I opened it up and the first item on it, was a photo of me holding my “special tribute” from the Governor and a House Rep. in Michigan. Then I saw the words, “2016 Ambassador of the Year:  Suzanne Stewart”.  I looked to my earlier emails for that day, and there was a beautiful note from Lori Monarca, the Executive Office Director of U.S.Pain Foundation.  It reads ” Congratulations to  you Suzanne on your nomination and honor for the Ambassador of the Year Award!!  What a great honor to have you win this as you have put so much time and hard efforts in such an amazing way throughout the community during the year!  Your determination and dedication is unbelievable and you are so worthy of this award. Thank you so very much for being a part of our U.S. Pain Family!” I proceeded to get beautiful and loving notes, one after another from these persons who I call my U.S. Pain “family”.

I later got emails from Lori and from Paul Gileno, the President of the U.S. Pain Foundation.  Paul congratulated me and told me that he was going to fly all the way from his home in CT. to my home in Michigan, to give me my Award in person!  I was so thrilled and couldn’t and cannot even believe the love and kindness shown to me by this pain family.  This is the U.S. Pain Foundation, my “family” that is made up of many other persons who also live with pain issues.  They strive to advocate and try to always help others. A family of pain patients helping other pain patients.

If you know anything about my life, you will know that things had never been easy growing up. Life just kept getting harder and more painful. Bad things kept happening to me, one after another.  I’ve never won anything and I never even thought about it.  Mostly because I’d always thought that “those kinds of things happen to other people”.  I’ve continued onward to be the best person that I can be. I try to think of others and treat people how I wish to be treated. I’ve made my fair share of mistakes and I’ve had days when I didn’t behave or speak in a manner that I would prefer. But I get up each day and keep trying to move forward in a positive manner; to the best of my ability.

As time went on, there were emails exchanged and plans were made for Paul to come to my home and present me with the Award. I was so excited and then nervous to make sure that I made a good impression, of course. But then again, I’m not sure why I was nervous? I had spent several days “hanging out” with Paul and everyone from U.S. Pain, last Summer at the Pain Summit!  We ate lobster together and even wore those little bibs ..LOL.!  The day arrived and it was Thursday, February 2, 2017.  I think that I changed my outfit about ten times that day.  I didn’t want to be too dressed up or not dressed up enough. I wanted to be dressed appropriately but what is appropriate, to wear for receiving an award?  We were going to go out for dinner and my family and friends were invited. It was all very exciting and I think I emailed Lori more than a few times within that 24 hour period, asking many questions. I even asked if I should wear my U.S. Pain Foundation, collared shirt, with their Logo on it. She was so kind and told me to just be comfortable.

I had nothing to fear, because once I opened up the door and saw Paul standing there; all of my nervousness disappeared. I only felt calm, happy, excited and appreciated. He is one of the most kind men I’ve met in my lifetime.  He came into our home and my husband and I chatted, laughed and joked with him for quite awhile. I felt very comfortable  and then he gave me the most beautiful crystal award. I’ve never seen anything so beautiful and with such wonderful, kind words engraved on it, too. It says, “U.S. Pain Foundation” (and their Logo)…then it says: “AMBASSADOR OF THE YEAR 2016–presented to SUZANNE STEWART, In Recognition for your Outstanding & Dedicated Services to the Pain Community”….I was in awe, my jaw dropped and my heart was beating quite fast. I feel so honored and humbled to receive such a beautiful award with words on it that are so meaningful.

I am quite humbled by this Award and by the entire experience.  I’ve never expected anything for what I do. I love people and helping persons with chronic pain illnesses, like myself. I simply do what I do because it honestly helps me to stay positive and gives me more of a “purpose”. Keeping other pain patients hopeful, positive and sharing information with them via my writing and support groups etc.; makes me feel happier. Like I always say “HOPE is a Verb. You must DO something in order to keep hopeful and positive”.  Helping  the U.S. Pain Foundation by holding Awareness events, being an Advocate and fundraising is another way that I get to help others living with Chronic Pain. It’s just in my blood because before I was disabled by chronic pain, I was an Interpreter for the Deaf. I worked with Deaf children doing speech, auditory training and taught American Sign Language. These days aside from being a chronic pain patient, ironically I have two hearing aids. I have hearing and vision issues since a car accident in 2002 left me with many health issues, several chronic pain illnesses and a Traumatic Brain Injury. But I’m always happiest when doing something for others.

A group of my peers anonymously nominated me for this award and the U.S. Pain Foundation gave it to me. To my peers,  I say “Thank you so much for the nomination. I have made some wonderful lifelong friendships by being an Ambassador for the U.S. Pain Foundation.  I’d like to reiterate that I feel humbled and so honored to have been nominated for and to receive this special award.  But U.S. Pain Foundation are the ones who deserve something wonderful for all that they do for persons living with daily chronic pain. They go “to bat” for all of us when they visit the state and federal legislators. They not only fight for our rights but they teach us how to fight for ourselves. There are:  conferences, webinars, Twitter chats, Social media days for sending out love and Information regarding rare diseases, Invisible illnesses and more!  They hold the annual Pain Summit to educate us more about ways to help ourselves. One of the main things U.S. Pain likes to teach us is to “take care of ourselves first”.  I really want to reiterate my gratitude for Paul coming all the way to our home in Michigan, to give my award in person and in front of my family and best friends. With that gratitude I also want to add the wonderful dinner and conversations that we shared. A chronic pain patient himself, Paul Gileno, flew several hundred miles to personally give me a beautiful, meaningful experience along with a lovely award. Again, I say “Thank You  very much from the bottom of my heart. I only hope that I can follow Joselynn Badman’s example of a true Pain Ambassador and Pain Warrior. I will continue to learn, advocate, share awareness and speak about HOPE for persons living with chronic pain”.

A Re-Post of “The Dr. with Chronic Illness”

A Re-Post of “The Dr. with Chronic Illness”

Hello Luvs,

This is a full article that I’ve re/posted here because it’s written by a Dr with chronic illness and pain!  She wrote this article in full and it’s here in its entirety.  I did not write any of this post, but all of the info regarding the author is here. This article was in “The Mighty” and all info is here for you.  I felt the need for more people to see this kind of good information and spread it: I personally thank Dr Amy for this great article which speak volumes to what she, I and so many others live with and go through daily ! Here you go, a re: posted article:

Chronic Illness

  • COMMUNITY STORIES

 Doctor with stethoscope

I’m a Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew.

By Amy Stenehjem, M.D.

I write about Chronic Illness

02/06/17

I’ve written this article to help educate those who want to learn about chronic illness. It is written from my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent five years of my life homebound due to chronic illness.

I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand chronic illness. My hope is that an increase in awareness will help strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness. 

About Chronic Illness

Chronic illness is a disease, condition, or injury that can last years or a lifetime and is typically not curable, though in some cases it may go into remission. It can vary in its severity, with some people able to work and live active or seemingly “normal” lives; while others are very sick and may even be homebound.

Many people with chronic illness have an invisible chronic illness. The severity of their symptoms is not clearly noticeable, which may lead to a lack of understanding and support from doctors, family, friends, and coworkers.

1. Nobody wants to feel sick.

In all my years as a doctor treating patients with chronic illness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to find answers and treatment for their overwhelming symptoms.

2. Many doctors don’t understand chronic illness.

For years, doctors were under the misperception that some chronic illnesses were caused by depression or anxiety and the only treatment available for these patients was psychiatric care.

Despite medical evidence disproving this perception, some doctors are “set in their ways” and do not truly understand chronic illness or how to appropriately address it. Therefore, patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen.

Pay No Interest Until 2018 With This Card

Sponsored by Next Advisor

3. Being unable to work is not a vacation.

Those who are not able to work due to chronic illness are not “on vacation.” They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing, etc. They are often homebound, too sick to leave their homes except for doctor appointments.

Have you ever been stuck indoors for a couple of days due to bad weather or a temporary health issue? Remember feeling annoyed with the inability to leave your home and be active? Now imagine not being able to leave your home for weeks or months at a time. Frustrating, right?

4. Chronic illness can trigger many emotions.

Chronic illness itself can change the biochemical makeup of the mood control center in the brain. In addition, frustrations such as the following can affect a person’s mood and lead to depression and/or anxiety:

the wait/search for a diagnosis

inability to work and feel productive

change in family dynamics

loss of social interactions and isolation

financial stress

the struggle to deal with symptoms and perform simple daily tasks

Those with chronic illness often feel a great loss. It is not unusual to experience some or all of the stages of grief (i.e. denial, anger, bargaining, depression, acceptance). They grieve for the life they once lived. They grieve for the life they must endure now. They grieve for the life they dreamed of having.

Many people with chronic illness also feel very isolated. Even though they crave social interactions, their symptoms may make it very difficult and at times impossible to talk on the phone or type an email or Facebook post.

5. The symptoms of chronic illness are very complex.

The symptoms experienced by those with chronic illness vary depending on the illness; however, many people experience some or all of the following symptoms: extreme fatigue, pain, headaches, brain fog, nausea, and/or dizziness.

It is not unusual for the symptoms of chronic illness to wax and wane over time (sometimes even from hour to hour), so planning activities ahead of time can be very difficult. A “good day” for those with chronic illness would likely be considered a sick day for most others.

6. Chronic illness fatigue is much more than being tired.

Fatigue is a common symptom in chronic illness and in many cases it is severe, often debilitating. It can be easily triggered by simple daily activities or by more elaborate events such as holidays. Those with chronic illness will often have to “pay the price” for engaging in an activity and then require days, weeks, or even months of recovery.

Those with chronic illness may need to rest often and may have to cancel events last minute. This does not mean they are lazy or trying to avoid activities. Once fatigue kicks in, there is no other option other than to rest. It’s as if the body “hits a wall” and can’t go further, no matter what. To better understand the fatigue and limited energy of a person with chronic illness, read this helpful article about the spoon theory.

Have you ever been stuck in bed for a few days from a really bad infection, surgery, or hospitalization? Think back to how that felt. You could barely get out of bed and simple tasks were exhausting. Now consider feeling that way every day, all day, for months or years?

7. Pain is a common symptom in those with chronic illness.

Those with chronic illness often experience severe pain, including headaches, joint pain, muscle pain, nerve pain, back pain, and/or neck pain. 

8. Brain fog is extremely frustrating.

Brain fog is frustrating because it is a difficult symptom to describe so that others understand its impact. Brain fog is a cognitive dysfunction common in chronic illness, which can include issues with word finding, concentration, and recall. Those with brain fog often know what they want to say, but can’t find the thoughts or words to communicate effectively. 

9. There is a greater risk of dangerous infections. 

The immune system in those with chronic illness may be overactive and instead of attacking infections the chronic illness immune system wastes time and energy fighting the body’s own organs, joints, nerves, and/or muscles. Many people with chronic illness are on medicines to suppress their overactive immune systems and consequently, need to avoid being around sick people. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness.

10. Certain foods can aggravate symptoms.

Certain foods may aggravate the symptoms of those with chronic illness. Common culprits are gluten, dairy, sugar, soy, yeast, alcohol, and processed foods. These trigger foods increase inflammation which can cause a significant increase in symptoms which may last for hours or days (sometimes weeks).

Because so many of these trigger foods are in our diet, it is often difficult to pinpoint which foods aggravate symptoms and staying away from favorite foods can be a challenge.

11. Sensitivity to smells is common.

Certain smells including perfumes, colognes, cleaning agents, and smoke can trigger headaches, brain fog, nausea, and other symptoms in those with chronic illness. Also, some of the medicines used to treat chronic illnesses are low-dose versions of chemotherapy drugs. The sensitivity is similar to that seen in those who are pregnant or on chemotherapy and have a sensitivity to smells.

12. It takes a lot of effort to manage chronic illness.

Those with chronic illness have to be very regimented to make sure they get adequate rest, avoid trigger foods, take medications at the correct times, and avoid flares. It is understandable that sometimes they just want to feel “normal” and eat some pizza or stay up late, even if they know they will “pay for it later.”

Despite struggling with grief, isolation, and often debilitating symptoms, those with chronic illness (and their caregivers) warrior on. They fight daily to be able to understand their bodies and to do things others take for granted. They are often surrounded by a society that does not understand their challenges, and therefore, is unable to provide adequate support.

You can make a big difference in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.” This is why it is so important you are taking the time to read this article. Thank you!

This story was originally published on Mastering Health & Happiness.

The Opioid Debacle

The Opioid Debacle

Symptoms-Opiate-Withdrawal-300x159

Hello Luvs,

Many chronic pain patients, like myself, have legitimate concerns that we didn’t have to deal with a few years ago. Just prior to this Opioid debacle that has occurred in these past few years, we had enough to worry about due to our pain issues.  We worry about finding good and trustworthy physicians, pharmacies that have our best interest in mind, tests that we endure and then pay for; among other things. We have to find a way to arrive at our appointments, possibly find someone to go with us and find Dr.’s willing to help relieve our pain. We just need someone to listen to our ideas, concerns and take our feelings into consideration at the same time. These days we have so much more on our plates and it is adding worry, pain and an increase in suicide to the list.

There are rumors flying on Twitter, Facebook and in the news media, that we have an “Opioid epidemic” in our midst.  Lawmakers and those who don’t have a clue what daily life is like for the chronic pain patient; have just blindly accepted this hype.  I totally agree that deaths from overdose of Heroin and other “street drugs” are happening. It is real and people are dying. I do know that the true “drug addicts” are mixing and/or changing some very helpful pain medications, with illegal substances and making more dangerous drugs that kill.  But taking the small amount of relief away from pain patients is not going to fix the problem. The CDC, FDA, lawmakers and  the Physicians who “don’t have a clue about chronic pain from a personal standpoint”; are taking away truly needed medications that lessen our pain on a daily basis. The chronic pain patient deserves to have some semblance of “normal” life. When they take away our pain medications, they are putting us back into our beds; where we are “sick” persons just waiting for relief.  Hoping and waiting for someone to help us “fix” this Opioid conundrum that is happening around us.

The problem that I have found during my research, is that these groups of people that have “power”; meaning the CDC, FDA etc.; are “lumping together” true chronic pain patients with the average drug addicts. We are not one in the same!  Apples are not oranges; just because both are called “fruits”. Dogs are not cats just because they are both animals. People who abuse drugs and chronic pain patients are not one in the same; just because both are human beings that need Opioids in order to live.  The craziness will not end and drug abuse problems and/or deaths will not be over, by taking Opioids from the true pain patients. The chronic pain community has been living in fear and agony since the new guidelines started. What I’m talking about is a real public health issue that is being made worse and not getting solved.  Denying the chronic pain community the one thing that may give us some small quality of life, is definitely not going to fix anything.

What I have noticed after speaking with a Governor’s secretary, a Senator and officials within my community, is that they don’t realize that there’s a difference between being an addict and being dependent physically. I heard a Senator say that she never thought about how a chronic pain patient may be physically dependent but not be “addicted” or crave the pain medications. They don’t truly understand that Opioids are sometimes the only choice and last resort. Some of us are not candidates for other treatment modalities. Frankly, there are others who just don’t want or cannot have another surgery that might increase pain and medical issues. I was told by one Senator, that we need to be a voice.  They need us to make phone calls, write letters and these kinds of articles. We need them to really listen and then make real changes.

The drug addict needs and craves their drug of choice in order to function. They get a “high” from taking drugs. They mix drugs and change medication from its original form sometimes, in order to get that “high” . A drug addict lives for their daily  “fix”.  The chronic pain patient, on the other hand, does not get a “high”from Opioids. We take prescribed pain medications in order to live some sort of life outside of our beds. We don’t live for the pain medications. We take them in order to have a life with lessened pain. The Opioids give a slightly higher quality of life to some of us and the unbending hand of the Government is slowly taking this quality of life away from us.

I totally agree, that Opioids should not always be the first drug of choice for chronic pain. There are other modalities to start with. But in the end, if the only thing that works for certain patients who live with daily debilitating pain, are Opioids; then these patients should be allowed to have them. The chronic pain patient should be allowed to live without feeling like a  criminal or as though we are “bad” or “flawed” people. We also should not have to take a slew of lesser medications in order to “try and fail” them before getting what a board certified pain Dr. may prescribe as first choice if his /her hands weren’t “tied”. The persons with power to do something about this debacle are continuing to deny tens of thousands of chronic pain patients the only treatment that may help lessen their pain, our pain, my pain.  They are holding us hostage to a life of agony and they need to be informed. Those persons who have the power to help chronic pain patients with this confused issue, are listening to  misinformation. They are looking at skewed  and manipulated data.  They are basing their choices, ideas and guidelines on poor medical analysis and data.

The guidelines for the use of Opioids in the medical setting should be changed immediately. Those persons on the committees who wrote these newer guidelines were those who have a monetary stake in getting rid of these medications. By this, I mean those who own other forms of treatment centers.They are also the “Prop” Dr.’s who have only one point of view and it’s not the same point of view as those who truly know what its like to live with daily chronic pain. The initial’s “PROP” stands for “Physicians for Responsible Opioid prescribing”.  But they don’t really approve of any kind of Opioid prescribing. They and others who wrote the current guidelines, want Opioids eliminated for the afore mentioned monetary reasons and due to the propaganda surrounding celebrities deaths from overdose.  In the celebrity cases, and many other high profile and even low profile deaths from overdose; there were other medications and street drugs mixed in with the Opioids. That is truly how those persons ended up dead.

The guidelines for the use of Opioids with chronic pain patients should be withdrawn now! They should be rewritten by a group that consists of board certified physicians who have true experience with chronic pain patients. Better yet, add some physicians who actually experience chronic pain themselves.  Excluded in the group to rewrite the guidelines, should be anyone with money to gain from getting rid of Opioid medications. Let’s get real! People die from NSAIDS! In fact, I’m not allowed to take them because of my chronic renal disease. Others die from Liver issues from taking too much Tylenol.

At one point, there was a group of U.S. Senators that introduced legislation to  put a federal tax on all Opioid medications! It was called the “Budgeting for Opioid Addiction Treatment Act”. In a nutshell, they wanted to make chronic pain patients pay one cent for each milligram of active opioid ingredient in their daily pain medications.  This money was then going to be used for treatment centers for drug addicts! How ludicrous is that?  Would anyone ever think about taxing my grandfather for taking insulin, because he is diabetic? Would they put a “fine” or so called “tax” on high blood pressure medications? NO! Nobody would place a “fine” or a “tax” on illnesses such as high blood pressure or diabetes, yet the medications taken for those illnesses also make people “dependent” on them. A person can’t just stop taking insulin or they could die! The heart medication that I take cannot be stopped abruptly, or I could have a heart attack! So you see, there are many medications that people may be “dependent” upon. That doesn’t make all sick persons “addicts”. We all take the medications that we need for our diagnosed medical conditions. The drug addict actively wants, craves and seeks out their drug of choice.  Those of us living with chronic pain truly wish that we didn’t need to take any medication. Chronic pain is an illness just like any other.

imagesIMG_3282

 

 

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

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

20130923-153902.jpg01 (160)

 

The Many Faces of Dysautonomia (NPR Article #10)

The Many Faces of Dysautonomia (NPR Article #10)

img_5165

Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how those who live with Dysautonomia feel much of the time. If the temperature drops and we get just a little bit cold, then we are freezing cold, our lips turn blue and we are shivering. It takes our bodies a long time to regulate when there’s a temperature change. We may start to sweat and feel so very hot from the inside out!  Many people don’t seem to understand the  fatigue, heart racing, inability to adjust our body temperatures, the GI upset,motility issues, inability to sleep or the pain. All of these feelings fall under this medical condition called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berserk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory, breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

Quite often those with Dysautonomia also live with Postural Orthostatic Tachycardia Syndrome. POTS causes feelings of being light-headed, fainting, dizzy, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold, as I mentioned above with Dysautonomia. Some people actually do faint while moving their body from the laying down or sitting position to standing upright.The diagnosis for POTS is usually made when a heart rate increases approximately 30 beats per minute (bpm) a few minutes after standing. Some people with severe cases of POTS, might need to get a pacemaker. There also may be other heart problems going on besides the Dysautonomia/POTS; as in my case.  *”Many times POTS shows up in women who appear to be “normal and healthy” on the outside. Researchers have found that these issues and symptoms are actually as disabling as such conditions as COPD and CHF” (*this information was found on “Dysautonomia International” website). Another common diagnosis for persons with ANS dysfunction or failure is “Arnold Chiari Malformation”.  This is something that a person is born with but it usually goes unnoticed until they have symptoms and then an MRI. It happens when the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. In my case I’m unable to hold my head up for a very long period of time because it feels weak and painful. “Chiari” can cause a number of disturbing issues for those who live with it. Some of these are: migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.

There are many “faces” to Dysautonomia, with its different symptoms and illnesses.  I’ve mentioned some of them, but there is so much more to this “Invisible Illness”.  For example; there are a number of other health issues associated with it and people don’t realize that some of these are linked together.  Some of these are:   CRPS or Complex Regional Pain Syndrome, Gastroparesis, Ehler Danlos Syndrome (EDS), CFS/ME and more.  Many times patients feel like they are just living with many different ailments.  Some physicians think that their patients with all of these different “issues” are just complicated. They don’t always look at how all of these ailments could be the many pieces one “puzzle”  that all fit together  because they are all under this “umbrella” of Dysautonomia.

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System (*numbers from “Dysautonomia International” website. Please try and remember these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr. has approved it! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  I’d rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of the statistics or medical information was taken from the “*Dysautonomia International” website at WWW.Dysautonomia.org. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day.