The Happy Challenge


The suffering of the chronic pain patient can be mostly silent, somewhat invisible.  People will sometimes ask “where are the bruises, the medical machines or the marks on your body”?  Let me explain about the “hidden bruises”, the “quiet bleeding inside” and the sporadic silence.  The “silent screams” are more often quiet because we are seen as complaining if we are too vocal.  When we don’t say anything or we look “fine”; then we must be Okay because we appear to be fine on the outside and we are not complaining. We may verbalize that we are tired and then they say “Oh yes, I’m tired too! I know what you mean. It’s normal to be tired at our ages. You just have to work through it!” They don’t realize that we have to “ration our spoons” throughout the day (see the “spoon theory” by Christine Miserandino, at http://www.butyoudontlooksick.com).  There’s no sense trying to explain it to them because it is not a battle of words that we have the energy to argue about.  Most people who do not live with and deal with daily chronic pain, just cannot understand or fathom the idea that just taking a shower and getting ready for our day, can use up so many of our “spoons” or so much of our energy.

We may agree to attend an event or a family outing if at all possible.  We don’t intend to break a “promise” but when we go against our own best judgement; we may then suffer.  Sometimes we go, but cannot stay very long; they say we are “phony”.  We try to hide how we are feeling, but sometimes even with our greatest strength, we have to submit to the pain and fatigue. We need to listen to what our bodies are telling us.  That’s when we start losing friends and family members. We start getting invited to social events less often. Though we really wish to be invited and truly want to go, if we possibly can.

Next, we have the other chronic pain patients who have knowledge of the “Spoon Theory” and some of the similar feelings that we all experience daily.  Then for one reason or another, maybe because we are not all at the “same place at the same time”; we may be judged again by our peers. It hurts, because we all experience the chronic pain and fatigue, but we may each handle it differently. I try not to judge anyone for doing what they need to do to take care of themselves. When you only “know” someone through social media, you don’t really know them or their daily struggles. You only know what they choose to share.  It hurts when someone judges me for appearing to be active on social media. It’s true that I am an Ambassador for the U.S. Pain foundation, I’m a freelance writer, a blogger, a mentor, a patient leader for WEGO health and I am a health advocate. But I don’t have to do anything on any day or days, if I don’t choose to. I may be in my recliner for 20 out of 24 hours some days. But that doesn’t mean that I cannot encourage, counsel, connect or give TLC to others.

If I do an event, then I am literally “down” for several days afterwards. It is worth it to me, just to stay as positive, helpful and useful as I possibly can be.  I also don’t admonish others who are not in the same place as me.  I remember times when I didn’t feel as happy inside and I still have periods like that. The ups and downs are pretty normal within the lives of chronic pain patients.  Sometimes when in horrible pain physically and/or mentally; people generally think that others should be able to see or feel things the same way as they do.

Now, I have a different strategy for dealing with the pain. I utilize every possible venue to express my own pain and my reaction to the changes that it has made in my life and our lives. I am not always positive, nor am I constantly happy and upbeat. But I do try to be positive as often as possible on Social media. Sometimes people’s lives depend on it. Naturally, we all have our darker times; but I try to rarely share those publicly.  I’m not saying that I’m right or this is right for everyone. I’m just sharing how I deal with my own personal pain.

I felt the need or the urge to write about this because I received a private note from someone. It really hurt at first and I was crying. I participated and usually do participate in the various online events and “photo challenges”. It may be for U.S Pain foundation, for WEGO health or for RSDSA etc.  It’s just therapeutic for me and I enjoy being a part of these online events. If I can cheer up one person then it is worth it for me.  If I can show one person, a light at the end of the tunnel, then I have given them hope.   Someone sent me this private message and it said;   “Not to start anything but….why do you devote so much time and trouble to your blog, your websites, groups and writings?  Why don’t you just deal with the pain, like the rest of us? YOUR “Happy challenge” was yours not mine…. I guess we don’t see it the same way. I just try to get thru the day w/the least amount of pain possible and thank God when I awaken the next day.  No drugs, no docs, just PT and pain shrink….”.  Like I said, at first I cried and I was hurt by these words. For a few moments, I felt like it was and has been all for nothing.  But it’s not for nothing. We are not all in the same place at the same time.  There are stages of chronic pain, just as there are stages of grief; they are pretty similar. But one thing for sure, I don’t put others down for taking or not taking medications or if they choose to use an SCS or a pain pump (for which I’m not a candidate, due to an Immune deficiency disease). I feel strongly about doing whatever is necessary to achieve the best quality of life that I can possibly have.  I don’t choose to go to as many Dr’s as I once did. I try to just visit the specialists that my life depends on.  I don’t just “wait for the next day to arrive”.  Though I do thank God every day, for giving me life. I also don’t do PT after 9 years of doing it and I don’t go to a “pain shrink”.  But that is my choice.  I do take a normal dose of Opioid pain medication, of which my life “depends on” now.  I’m not “addicted”, but “dependent” on this medication. But guess what? I was able to attend my youngest granddaughters’ first birthday party because of this.  I GOT the pleasure of attending a U.S. pain conference this past weekend.  I got to do it and got through it, because I am able to take a pill that helps me get through these events.  Yes, of course I suffer still, for a few days afterwards, but I have the memories and so do the “little ones” and the other people who I got to spend time with. I also got to experience other persons like myself, who want to make a difference and try to help in the world of chronic pain.  It’s not for everybody and that’s OK.  We are all different, it’s supposed to be that way.  I don’t particularly enjoy things like gardening or cooking. Some people couldn’t imagine life without those things. I am me and that is OK.  I cannot please everyone and it’s alright.  I’m not crying any longer about the message. Instead I feel badly for the person who wrote it.  They are in a darker or more sad place than me. I will be there for them if or when they are ready.

It’s a difficult kind of life to explain when you look fine on the outside, your photos look like everything is “normal” on the outside; but my body burns and aches even through the smiles. I’m just like some of the other chronic pain patients, but I choose to outlet my pain in different ways. Nobody says that my way is the right way, but it’s the right way for me to express my pain and try to help others in the process.

 

 

Castle On The Hill-ASL


Castle on the Hill by Ed Sheeran in ASL *****************YouTube notice–Copyright disclaimer under section 107 of the copyright act 1976, allowance is made for fair use for purposes such as criticism, comment, news reporting, teaching, scholarship, and research. Fair use is a use permitted by copyright statue that might otherwise be infringing. Nonprofit, educational or personal use tips the balance in favor of fair use **********sorry for a couple little mistakes, I apologize. I’m a chronic pain patient and tried my best in extreme pain today.i needed cheering up and ASL with a favorite song helps every time. I used to be an Interpreter for the Deaf at University of MI hospitals and st LESA /magnet schools Deaf ed. Program. I’m now a chronic pain patient with several chronic high pain illnesses especially CRPS (Complex Regional Pain Syndrome) and I’ve suffered a TBI (3 yrs if Brain Injury rehab), a CVA (stroke) & an MI (heart attack)…. I have a pacemaker and also have 2 hearing aids because Ive been HH since I was injured in a MVA in 2002. Thank you! For watching & don’t hesitate to ask questions and/or make requests for songs…

 

June Is PTSD Awareness Month


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With all of the different awareness ribbons and events, fundraisers and 5k walks for different illnesses out there; not many want to talk about PTSD. During the month of June each year, time is set aside to remember the illness called “Post Traumatic Stress Disorder”.  It seems to be an awareness month that we don’t talk much about but it is a very real illness.  PTSD is a disorder which can occur when there is a failure to recover after experiencing or witnessing a shocking, scary, dangerous and/or terryifying event or events. According to the Mayo Clinic, there are more that 3 million cases each year in the United States.

This illness can last months or years, with certain words, ideas and even smells that trigger the memories of the trauma. Along with the memories that return, there are intense emotional and physical feelings and reactions in the body.  Some of the symptoms of PTSD might include things like depressed mood, anxiety, nightmares, flashbacks, heightened “fight or flight” response and avoidance of situations that bring back the trauma.  There is treatment for this illness which may include Psychotherapy, behavioral therapy and medication.

There is a natural “fight or flight” response in our bodies that is supposed to warn us when there is danger near or that something terrifying might happen.  It is normal to feel afraid during and after a traumatic event or situation occurs. This fear is something that brings about a chemical change in the body to protect us from whatever may be happening that is fearful.  It is the body’s way to help defend against or avoid danger or dangerous situations.  Most people recover quickly and naturally from the initial symptoms of a fearful experience.  There are those who continue to experience problems and feel stressed or frightened even when they aren’t in danger any longer.  These people are sometimes diagnosed with PTSD or Post Traumatic Stress Disorder.

Not everyone who experiences PTSD had been through something very dangerous, but instead may have experienced the loss of someone very close to them. The symptoms usually begin within 3 months of the traumatic event, but often can occur immediately.  These symptoms must last more than  one month  and be severe enough to interfere with working and personal relationships, to be considered true PTSD.  Some people can and will recover within 6 months, some have chronic symptoms.  A Doctor who has experience with mental illness, such as a PHD Psychologist, Psychotherapist or Psychiatrist is needed to diagnose PTSD properly.

One of the most common things that people experience with having PTSD is called “flashbacks”.  This happens when you relive the traumatic experience inside of your mind or body over and over.  There are physical symptoms like a fast or racing heart beat, sweating, bad dreams and invasive fearful thoughts.  People with PTSD also try to avoid smells, places and situations that remind them of the experience(s). An example might be a bad car accident; afterwards a person with PTSD might not want to drive a car or even be a passenger.  When you have this illness you are or can be easily startled, you may feel “on edge” and have insomnia or have trouble sleeping. When someone experiences these unpleasant feelings after a traumatic event for just a short time afterwards, it is called ASD, or Acute Stress Disorder.  When they last longer and affect a persons ability to function, it is then called PTSD.

If you would like to participate in the June PTSD awareness month events on Social media, you can visit http://www.ptsd.va.gov/about/ptsd-awareness/promo material awareness.asp.  You can also follow the National Center for PTSD on Facebook and Twitter.  Those links can be found at the bottom of the website at http://www.ptsd.va.gov.  No matter how much you think you know about PTSD, there is always more to learn and ongoing research, new treatments etc.  Please take action, help those who suffer and live with this illness by visiting:  www.ptsd.va.gov/public/wher0to-get-help.asp.  Spread awareness as often as you can, but especially during the month of June each year.  This is the month which is set aside for people to share information and make people more aware of this debilitating condition that I, and many others live with. Take the mystery out of this condition, learn about it, find out who is affected an how you can help.

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Under-treated Chronic Pain Can Kill


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Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!

So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?

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I Can’t Stop The Feeling


An ASL Cover of this popular song sung by Justin Timberlake. It’s from the Dresmworks movie called “Trolls”. First I have posted the formal and regular ASL version of this song (American Sign Language). The 2nd version is a funky & fun version! Please check out my YouTube channel with over 45 (as of 6-20-17)ASL covers of popular, holiday , Broadway & Christian songs! I’d like to please ASK you to SUBSCRIBE TO MY ASLSUZYQ YOUTUBE PAGE!! I need subscribers in order to get my page name! Thank you so much!

P.S.: I also have another Youtube page @ Youtube.com/Suzydukettes and it’s an Advocacy channel with videos for spreading the news on behalf of the chronic pain patients.

And here’s the funky one!:

Some Kind of Normal


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I would like to respond to an article from May 23, 2017; written by Steve Ariens, Pharm D, or as we know him, “Pharmacist Steve”.  I want to say “YES, Pharmacist Steve, WE ARE Quite Different”! This week I read an article entitled, “A Country of Drug Seekers” (National Pain Report, May 23, 2017).  In the article, the author, A Pharmacist who is known as “Pharmacist Steve”, stated that “we should look at those who take/use opiates and controlled substances… and consider those that take them legally and those who take them illegally-because our society will not allow them to obtain them legally, and ask “Are they all that different?
He goes on to say that “both groups are suffering from depression, anxiety and physical and mental pain.” Also that “both are trying to “improve” their quality of life….just that their own opinion/definition of “improve” may be quite different.”

I will agree that everyone, or the majority of the public want to “improve” their quality of life.  That’s a given, isn’t it? Whether you are a pain patient or an airline pilot, most people want to consistently improve the quality of how they live.  I vehemently disagree with his assumption “are the two groups all that different”?  Nothing is the same about these two groups of people. Persons with chronic illness do not obsessively think about and seek out something to make them “high”. A drug addict has a mental illness, along with an addictive personality; and does exactly that. I’m sure some chronic pain patients also have mental illness, along with some Dr’s, nurses, housewives and Scientists. I believe the number that research had noted was that less than 4% of chronic pain patients actually become “addicted” to their pain medications.  In fact a very high profile Pain management physician, Dr. Forrest Tennant, M.D. Cited that percentage in an article at NPR, October 2015.  I don’t agree that we “are all suffering from depression, anxiety, physical and mental pain”.  The mental anguish that “we”, the pain patients, live with now days; is from the fact of not knowing if or when our treatments/medications will be withdrawn! I would say it is more similar to a patient on dialysis not knowing if or when their dialysis facility is going to close and there’s not another one for hundreds of miles!  It may be similar to a Diabetic wondering if their insulin was going to be taken off the market completely? Then how would they live? What would they do? They would be in “mental anguish”.  Without pain medications, (*that some of us have been on for many years, doing well, with little or no side effects); how will we be able to tolerate the unrelenting daily struggle with high chronic pain illnesses? Some  of which are up to a #43 on the McGill pain scale? There are some people that are living with chronic pain and depression, but we are not all living with pain and mental illnesses. There should not be a stigma, by the way, to living with either or both of these issues.

I also strongly believe that chronic pain patients who sign a contract with their Pain Management physician, agree to take urine drug screening tests and take their medications exactly as prescribed for their legitimate diagnosis’:  should not be in the same “category” as those who are “abusing” and “using” illegal substances to get “high”.  We, the chronic pain patients are very different in that we don’t all have “addictive” personalities.  In fact, at my pain clinic, I went to see a Pain Psychologist and that Dr. told me and actually put it in writing, that I “do NOT have an addictive personality”.  I may not be the same as everyone else, but chronic pain patients are not the same as drug abusers who use Heroin and cocaine to get a “HIGH”.  We don’t get “high” from our pain medications.  I run several support groups for different chronic pain illnesses.  I have spoken to many chronic pain patients and I can speak for the majority of those who have been taking opiates for several years. We do not “crave” our pain meds, nor do we think about them all of the time.  We don’t sit around and wait for the next round of pain medications and obsessively ruminate about them.  Mental “Pain” and mental “illness” are not one in the same either, according to anything that I’ve ever read or heard in my lifetime.

I have made numerous videos on my advocacy YouTube channel and I’ve written several articles on the subject of “pain patients being lumped together with drug addicts”.  There is a difference between these two groups of people.  Time and time again I am making memes for Social Media, writing on the subject or speaking about it.  I’m really growing weary of having to defend my community of chronic pain patients against those in Washington and others with authority over us.  When Pharmacist Steve stated that “some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.”  Well, of course we draw a line between drug seeking behavior, drug addiction and legitimate chronic pain patients who need their medications. Drug addicts live for their next dose or next “high”.  While the chronic pain patient needs their next dose of pain relieving medication in order to live.  We need pain meds so that we may have  some semblance of a life outside of our bed or recliner.  There is a “line” between us, it is like comparing “apples to oranges”.  How many times do we, the community of legitimate chronic pain patients, have to fight for our dignity and our separateness from stigmas that are put upon us?  If you want to “lump us together” with a group of people, why not “lump us together” with other medical conditions in which the patient is “dependent” on their medications?  According to Dr. Tennant’s calculations, as a leading expert in pain management; 96% of chronic pain patients do not become addicted to their Opioid pain medications.  Those of us who have been on a regular dose for many years and who are doing well, should be left alone!  We are dependent just the same as a heart patient is dependent on arrhythmia  or high blood pressure medications.  The group of people that we have the most in common with are those who take medications for a chronic illness.  The kind of medications in which their bodies are “dependent” upon in order to live some kind of “normal”.  We, the chronic pain community just want to “live some kind of normal”.  We are tired of being grouped  or lumped together with illegal users and abusers of drug seekers.  We must remember only two words.  These words are “dependence” and “addiction”.  They are as different as night and day, black and white and medication user verses drug abuser.

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