Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
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.
This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often. Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long. Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet. I hear my husband call my name. He always says “Hello my Love, Good Morning! Time to rise and shine!” He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day? Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?
After 40 minutes has passed from the time I took my medication, I attempt to get up. First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up. But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.
He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer. What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives. Eventually they stop helping and I’m alone again. I don’t want to give up, because some people just need someone to listen, anyone. I like being that person. I want to help and do something of value with my life.
Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day. I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse. I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me. We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.
In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain. They don’t understand that I am in pain and that’s a good thing for now. I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me. Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love. By that time it is 3:30 in the afternoon. It’s been a full day and my pain has risen from the activities. I can’t do anything else. I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time. I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens. My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now. If I just throw caution to the wind, and eat to be social or “fun”; I suffer more. There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way. Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand. My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.
Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile. All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning. He kisses me goodnight and tells me not to stay up too long. I tell him that I will come to bed as soon as I feel like I’m able to sleep. Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM. I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either. We try to give each other support and the strength to persevere. Finally, the sparks of chatter start to diminish online. I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.
***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s. I try to stay away, keep my distance. For some reason, I cannot “let go” totally. Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t. My oldest brother used to try and protect me, but one day he stopped. It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me. I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast. None of them will talk to me or even look at me if we meet.
I don’t get invited to the very very large family reunions. Even though I was the only one in my nuclear family that ever attended those functions. I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood; we could relate to one another.
But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad. ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or. cut my own food. She said that “seeing me in so much pain, made her depressed. If she was depressed, then her family would suffer.” Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday. It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again. Only one cousin spoke to me and only one other even looked my way and smiled. My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.
**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room. Only a gathering of many who really don’t know each other anymore, but had one thing in common. That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives. Those who want to give and receive; or share love with us.
When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about. I never knew if I would have that, some people never get to know it. People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love. I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life. They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.
I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”. My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”! She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.
I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2. We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do a lot of outings and I just am not able to babysit alone, without my husband there. I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident. My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline. I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!
So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed. My pain Dr. is much better now and the regimen that I’m on is safer. But I’m unable to do the activities that I wish to do with them. If I was the person that I had been, I would be making snow angels with them in the snow. I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together. I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.
Time has changed me and now I am tired and in pain much faster; more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”. It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery. I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all. I want to spend a whole day at the zoo with my granddaughters. I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning. Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference. Things that I wish I could do, I no longer am able to do. I love and look forward to babysitting when my husband is home and he is with me. He is there so that when I start to be too tired and in too much pain, he takes over.
But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident. My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself. I couldn’t even go to the rest room without help. My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad. When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family. I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead. I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.
We are the pain community of the United States of America. How are we to know who to believe or what is the truth? Nothing feels transparent anymore, or has it ever been? I am writing this as a non partisan Chronic pain patient. I don’t know what to think anymore or who to believe. I remember President Obama standing right there inside of my Television set, telling me, looking me in the eyes and stating “If you like your Dr., you can keep your Dr.”! He told us that we could choose our physicians, hospitals and that things would not change much, but only get better. But then our premiums and co-pays tripled in amount. We went from a zero deductible on our health insurance plan to a $1200.00 per person in the family, per year! My husbands paycheck went down to what it had been 7 years ago and the paychecks continued getting smaller. Every test and everything that I have to get done, medically must be paid “up front” for the first $1200.00. Then they will pay maybe 80%? Our co-pays for medications went from $5 to $40 for each of my several medications and office visits went from $10 to $30 per visit. Living with too many high chronic pain illnesses to name, this is really hurting my family.
Don’t get upset with me yet, I’m not putting down anyone, nor am I supporting them. I’m just trying to get the facts out of my head and onto this page. I want others to know more about both, so they can possibly feel informed. We all know that if we read or turn on the TV, to become more knowledgeable about this, sometimes we cannot see the truth from an untruth. It all seems to depend on which channel you watch or what newspaper you read.
With Obamacare we were promised that health premiums would decline by $2,500 per family. But the average premium has gone up and the average family’s employer-sponsored health care plan now costs more than $18,000 a year. My husband and I have an employer-sponsored health care plan and it has tripled as I mentioned above. Last year in 2016, we saw an increase on the Obamacare policies and in 2017, at least in Michigan and for individuals; the premiums are supposed to go up almost 17%! The UAW is happy because in 2018, all of their employee provided health care was going to be counted as income and TAXED! It is called the “Cadillac TAX” and it was going to have the middle class working families fund subsidies for poor people. This is crazy! How can people live day to day when they are ill at all? Do they really just wish us “away”? Physicians are quitting in large numbers and pain Dr.’s are leaving in droves.
Now President Trump comes in and says that he is going to “fix things” for us. But I don’t know what to believe about this new healthcare bill. We won’t until we read the final Senate approved version. Below I have described for you a few of the changes that appear to be an improvement over Obamacare:
- This new Health care Act will eliminate the individual and employer based , “FINE”, or “PENALTY”; which is money that someone has to pay if they don’t wish to purchase Obamacare or have insurance at all.
- The new Health care Act would help decrease or take away the Obamacare taxes that have increased the premium costs, and limited options for patients and physicians.
- Everything that I have read about this new Health Care Act, states that persons with “PRE-EXISTING CONDITIONS” are guaranteed coverage. It also bans health insurance companies from raising premiums for people with pre-existing conditions also. The catch is this: You must maintain insurance coverage or sign up for new insurance within 63 days of leaving your current plan. I also read that they are putting 8 billion dollars in a special fund for states to help people with pre-existing conditions. That is so all of the healthy people don’t have to pay for us unhealthy people.
- This plan is allowing parents to keep their young adult children or dependents covered until they are 26 years old. This is a part of Obamacare that I’m pretty sure everyone likes.
- This plan is supposed to help Americans access affordable quality health care by giving us a tax credit. I read that this credit would be between $2,000 and $14,000 per year for low and middle income families and individuals who DON’T RECEIVE insurance through an employer or a government program
There is a “Public Health Service Act” in legislation that is requiring members of congress to also partake in this American Health Care Act. So they are saying that there will be “no exemptions” and everyone will be getting the same plan(s). This means that the government employees will have to have the same coverage as the people.
It is very regrettable that so much misinformation is being spread about this bill. I especially feared for the “pre-existing conditions” part of this Health care Act. All I heard from everyone was that these were going to be excluded and people like me, with many health challenges; would not be covered. But from all that I’ve researched and read for myself, this is the truth: Under no circumstances can people be denied coverage due to a pre-existing condition! The laws that we have now will still be in place and can only be changed if a state chooses to take care of us in another way. No state can take away our coverage based on a “Pre-existing condition”, regardless if they get a “waiver” or not. From what I’ve read, nobody can be priced based on their health status as long as they’ve maintained continuous coverage of their health insurance.
On November 8th, 2016, by the rules of our American constitution and by the votes of the American people, Change happened! Whether we like it or we don’t, it is happening right now. One thing we don’t want is for the government to take over our health care. We need to be allowed choices and to have the freedom to choose our health care.
To reiterate some things that I’ve stated, I understand that members of Congress will have to have the same AHCA as the people of the USA with no exemptions. I also now know that people with pre-existing conditions will not be charged higher premiums, nor will they be excluded from health care coverage. There are special funds for states who choose to opt out of certain programs, it appears. But still they are saying that nobody with pre-existing conditions will be hurt in this plan. There is something called the “MacArthur amendment”. This amendment allows the insurance companies to charge higher premiums for a person with a health condition ONLY IF THEY DO NOT MAINTAIN CONTINUOUS COVERAGE. It also only applies to the “individual insurance market”, which really only applies to 7% of the country. So you see, this does NOT apply to 93% of the persons with employer-provided coverage or government coverage, such as: Medicare, Medicaid, Tricare, VA benefits and others. One last piece of information is that the higher premiums included in that 7%, can only be charge for ONE YEAR and only to people who did not maintain continuous coverage. Lastly, the 8 billion dollars for the special state programs will be ON TOP OF $130 billion. This will be available to states through the American Health care plans’ patient and state stability fund. The states can use these funds to help lower the out of pocket costs, like premiums and deductibles. They may use the money also to help maintain preventative services (annual health check ups), dental and vision care.
Lastly, regarding the AHCA, there will be a refundable tax credit to persons without other health care options so they can get covered and stay that way BEFORE something medically catastrophic happens to them. All of these ideas stated in this post seem to prove to me that people with pre-existing conditions will be covered. But we really won’t know anything until the final version of the AHCA is passed. We can only pray that both parties will try harder to work together and stop so much “HATE” for the other side, whichever side that may be. The Government needs to work together for something that will be a combination of what the Democrats want and need to work for their constituants and what the Republicans want and need for theirs as well. We all are ONE COUNTRY and it is turning ugly. I don’t like it one bit. I don’t want to be for or against anyone or anything until I know the whole truth. I don’t want anyone to be hurt. I certainly don’t want anyone that I love or me, to lose health coverage. Mostly everyone I love has a pre-existing condition! So let’s just wait a bit, until we have all of the facts. I’m not for or against either party, I’m just trying to get some information out there for all of the people.
Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain. Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day. Some think we are lazy, anti-social or just rude. We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients. We must grieve our losses and find new hopes and dreams. This is the price that we pay for living with chronic pain 24/7/365.
I am still “me” underneath the chronic fatigue and pain. I still want to talk with you and hear about your day, family and dreams. In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world. Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else. I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere. Sometimes even sitting on the floor with them. You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends. You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?” If you think like that, I can’t blame you because I once thought those same misinformed thoughts. What you don’t see, is how I get to the floor or how long I am actually down there. You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor. You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm. You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night. Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever. Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day. Often I fight with myself about going to sleep at night. Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours? If I sleep more than 2 or 3 hours, I will awaken and cry. Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry. It’ a routine that we have, you know? My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.
You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights. I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum. But even to him, my pain is not invisible. He knows the grimace of CRPS and the fidgeting of the intensifying pain on an outing. He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”. I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment. I cannot commit to babysitting for the little ones under school age for a week. I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.
Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become. I’m probably not always much fun to hang out with, but I’m still “me” inside. Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt. Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed. I’ve had nasty notes put on my windshield, that would make anyone cry. One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house. I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror. But I was still judged and torn to shreds because of the way I look.
Please know the difference between being able to stand for 20 minutes and being able to stand all day. The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow. Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”. I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends. Though I may “do” these things; I definitely know that I will “pay” for it later. I will rest for days in between and sometimes weeks. But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best. Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.
Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating. I’m doing my best to cope and live my life to the best of my ability. I ask you to bear with me, and accept me as I am.
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)