From Mini Van to Wheelchair In 10 Seconds!

From Mini Van to Wheelchair In 10 Seconds!

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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.

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We The People, The Pain Community

We The People, The Pain Community

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People should not be Labeled as a “pre-existing” condition. Chronic Pain patients aren’t a subclass of persons who are lesser than others.  Why wouldn’t we be afforded the same healthcare options as anyone else?  I would say, after reviewing the list from the new AHCA, that just about everyone has a “pre-existing condition”.  I mean really “post menopausal” is a “condition”?  No it’s just a part of the normal progression of life! I just don’t understand this entire idea? The list is so long that I’m sure everyone in the entire USA, over 25, has something on that list!

WE are the pain community of the United States of America! We belong to this country just the same as non-pain patients.  We hear so many different opposing opinions, that it’s hard to know who or what is true? If someone in Congress got injured and they had multiple chronic pain issues, I’d bet they would want the same insurance coverage as their counterparts.  In fact, all of the branches of government should be given the same health coverage as “the people” of the USA.  It does make me worry that they are going to be giving the states, the option to “opt out” or not. If they do “opt out”, then they will get 8 billion dollars set aside to help people with “pre-existing conditions”.  But since that makes up just about everybody, I’m afraid that money won’t last long.  Even the extra 130 billion dollars is going to be gone in a few years, and then what?

We are told what the government wants us to know. I don’t know honestly, what is the truth?  Several years ago, President Obama told us we would be able to keep our own Dr’s., and then we weren’t able to do that! Now President Trump is telling us that “pre-existing conditions will be covered on the AHCA”.  But what are all of the underlying phrases, “ins and outs” etc.?  Really things couldn’t go on the way they were going because the prices have become astronomical! It’s gotten out of hand and the people couldn’t and cannot afford the ACA either.  My own situation, as the wife of an employee of an employer based insurance program; ours has tripled or more in the last several years.  Instead of my husband getting raises, he is making much less than he was 7 years ago! We have to pay $1200 each, annually  for our deductibles, let alone the cost of the co-pays and the 20% that we have to pay just to have the insurance.  I’m grateful to have it, don’t get me wrong!  But it’s getting more difficult all the time.  Living with several high chronic pain illnesses and heart/kidney diseases; it has become a very heavy load on our money situation. I’ve had so many of my Physicians leave. Many have told us that there are less and less prospective physicians in medical school these days because of the uncertainty of the pay etc.

I cannot even watch the news anymore. I don’t want to hear or see so much negativity.  There’s nothing comforting in our news media anymore. I’d really enjoy seeing more rescued kittens and less of Presidents Trump and Obama, honestly.  We can turn the channels and get two totally opposing views on any one subject in the news right now. I don’t even feel like we are in the USA anymore.  I feel like things are being hidden from the people and maybe they always have been? Possibly I’m just more aware of this now? I’m not sure except to say that it feels unsettling and I just don’t know what is going to be the outcome?

In Michigan, if Obamacare were to stick around, then the premiums were going to go up by 17%! All of the employee based health care, like what I have with my husband; was going to be counted as “income”, starting in 2018.  It is called a “Cadillac tax” and this way the working families of the middle class pay for the poor people. I’ve never minded helping my fellow citizens, but who is going to help me or us?  It’s hard to know what might’ve happened or what will happen? President Trump comes in now and  vows to “fix” things.  But it’s been nothing but chaos since he’s started his presidency.  There’s so much meanness and hurtful words spewing out from everywhere. Not just one side or the other.  Why does there have to be sides anyways? Why can’t we all just be American’s trying to live and work to help each other. Why do we have to be put into little “groups” instead of just being “Americans”?

Now I hear Congress, my own Governor and the President all stating that “Under no circumstances can people be denied coverage due to a pre-existing condition”.  But then why are we so afraid? Maybe because we’ve heard so much of this in the past and it always turns out not to be true? I truly don’t like to hear so much talk about how everyone wants to “hurt” someone in the government. I don’t want to hear it from President Trump and I don’t want to hear it from the TV set every time I turn it “ON”. Let’s stop hurting each other and plotting out what hateful and hurtful things we can think of to post or say today.  Lets work together, since there’s not much else we can do at this point.  It would be so much more pleasant if we could find a way to become “one” and work to gather to find solutions to this “mess” with the health insurance in this country.  Most everyone I care about has a Pre-existing condition. It scares me to think that we are being lied to again. The Pain community is not a separate group of people who are living on some isolated “island” outside of the USA.  We are people just like everyone else. We are part of these United States and so are our illnesses.  Just about everybody has something wrong with them. Whether it be mental illness, physical illness or pain conditions, I feel that most all people have some kind of “pre-existing” condition that needs paid for one way or another.  We need to stop the anger and hatred. Leave that up to those in the government, if that is how they want to behave. But we, the people    need to form a “more perfect union” and unify this country again.

 

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Some Facts About Pre-Existing Conditions And The AHCA

Some Facts About Pre-Existing Conditions And The AHCA

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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.

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What You See Is Not What You Get!

What You See Is Not What You Get!

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

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

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

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

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

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

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An ASL Cover, Defying Gravity from “Wicked”

An ASL Cover, Defying Gravity from “Wicked”

Please enjoy watching the ASL Cover song below, of “Defying Gravity” from the Broadway show “Wicked” and sung here by Lea Michele. ¬†This is from my YOUTUBE page called “ASLSuzyQ”, please subscribe to my YOUTube Page after watching. Thank you so much! Enjoy! ¬†Feel free to tell me in the comments, what songs you would like to see done in ASL.

 

Chronic Pain In A Culture of Intolerance

Chronic Pain In A Culture of Intolerance

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Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge.  I’m feeling both proactive and protective.  I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about.  While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing  many lives in a negative way.  Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”.  He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”.   Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening.  I’m trying to get someone to listen to us.   As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players.  When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story.  When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin.  There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”.  I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.

I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”. I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict! That is not the same thing as someone living with daily chronic pain and knowing that  life will always be this way.  Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available.  We realize that we need to give different options a chance.  But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options;  then they/we need reassurance.  We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!

I am in a group of people called “chronic pain patients”. We are not drug addicts! The definition of an addict, according to the Dictionary (on Definitions.com) is this:  “to devote or surrender oneself to something habitually or obsessively”.  I can speak for myself and the hundreds of chronic pain support group members that I mentor.  We  take only the medications prescribed to us by our physicians and/or Pain Management Physicians.  To clarify, I will explain further the difference between the addict and the pain patient.  The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly.  The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor.  Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking.  On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly.  They can’t function because they’re thinking about their next dose all day long.

I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me.  It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts.  She wrote about the deaths of people who have overdosed.  But how many of those deaths were people who took only their prescribed dosage of pain medications?  I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”.  The CDC has qualifiers for their “Morbidity and Mortality weekly report.  She researched the information that she was given and found that those qualifiers are as follows:

  • “approximately 1/5 of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids.”
  • “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths”

The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?”  Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication.  We just can’t lump medications and street drugs together, that is irresponsible.  Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”,  according to our own National Pain Report in November 2015.  As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others.  We don’t become “addicted” to our prescription pain medications.  Our bodies may become tolerant or “dependent”, but  we are not addicts.

There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless.  They empower us and encourage us to do whatever we can do but never more than that.  We have a voice and it needs to be heard.  Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365.  When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief.  But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month that goes by.  We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.

I feel that people who are doing this are doing it for the wrong reasons.  People need to be educated regarding Opioids instead of being afraid of them.  There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS).  Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel.  Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.

 

 

 

 

 

Helpful Insights on CRPS

Helpful Insights on CRPS


Hello Luvs,

Here are some ideas for mostly helping with CRPS-Complex Regional Pain Syndrome. I’m sure you could use this advice for any chronic pain illness. The ideas are those from Dr. Pradeep Chopra, MD. A friend of mine went to a seminar that was hosted by RSDSA (Reflex Sympathetic Dystrophy Association),where he spoke. She gave me this info and I put it into list form for you to have and keep. I hope these help some of you!     (from Chantal Granger): 

1. Have all blood work from all your doctors at once

 2. Have them numb spot for IV before they do it

 3. Take pictures of both limbs to take to doc during flare ups

 4. Make a took kit for when you have flares it comforts you like scent word search books special blanket, Pictures etc

 5. Lower nerve blocks are useless if the first few don’t work and it’s not at the start of CRPS

 6. Magnesium is very important 

 7.  Pills don’t work as well as rubs oils or salt water made with magnesium salt. 

 8. Always be honest with doctors. Bring all meds to appt and try to have them all work together or exchange info. Bring list for treatment plans and anything new to all doctors

 9. SCS (Spinal Cord Stimulator) will not help pain as much a few years after. No real way to see if the test is right the wires can move while scare tissue moves or when implanted 

 10. Ketamine- make sure they keep you awake so you can tell them when it’s working so you get lowest dose you need. They should start at 100 and go up too 500. 100 an hour. 

 11. Don’t see a doc you don’t feel comfortable with or one that has No clue what CRPS is. Ask for referral to one that does.

 12. Never say yes to a test or treatment you don’t know about or feel comfortable. 

 13. Bring as much medical information about your case as possible, if you go to ER

 14. Building up brain cells and body nerves with different vitamins will help a lot.

 15. Exercise if you can’t physically if you look at something and imagine your hand reaching for it and imagine picking it up and work at hard at it your brain will start to believe it and that will make that part of your brain stronger.