I am taking the "30-Day Challenge for pain awareness".... which today is the 3rd day. Yesterday I wore "blue" along with a sign in my car from a photo I made like this one. Today, I am supposed to write down what I would be doing in life if, I was not sick, and have chronic pain issues. Well, first of all, I would probably be doing something in the medical field. I had wanted to be an RN ever since I was in my teens. But, now, if things for me health wise were different, I could see me being a researcher, and doing research on illnesses, such as these autoimmune illnesses, Lupus, RA, Sjogren's, Raynaud's, and so many more, hundreds, and would be trying to find out the "origin" of what causes them that hopefully would lead to a way to stop their progression OR possibly have a way that NO ONE ever had to even have them in the first place. I would be "more active"... going out more, taking my Mom out more... and doing things with friends... right now honestly, I don't have many "friends" as far as here near me... not those that I could go out to dinner, shopping, a movie, or even to the casino with for a day or overnight.... And the reason for that is these illnesses. I never know from one day to the next, if I will wake up feeling "okay" or wake up feeling like as my Dad would have said "pulled thru a knot hole backwards"... LOL... then there are days I wake up fine, but in a few hours I feel horrible, or can feel like hell when I first get up, and within a few hours, feel better... these horrid diseases, which 99% of them include some type of chronic pain, take over your life. Even though many say that can win the battle over them, and I do for the most part, they still have their way of putting you on your butt, even when you try your best to fight against them. I would also already have my 3rd book published, my home would be "more completed" as far as all of the DIY stuff I've started, and some I can't do simply because my health in one way or the other puts a damper on something. We, even myself, before the AI illnesses, took many things for granted... even though I suffered migraines since the age of 17 yrs old, I still could more or less "have a life"... go out, go to college at night, work, do lawn work which I love, and just go do things like shopping or eating out in Dallas, or going down to San Antonio to the River Walk for a weekend... now those things are either almost impossible, OR they are a bit more difficult for me to plan to be able to do... just the stuff here at my house, painting, laying the floors in my kitchen, bath finishing out the walls in my bath, and wiring the lights in, and things like that, some I can do, and others my body no longer allows me to handle. So, a "new normal" (which by the way is kind of one of my "mantra's".... would be to enjoy and do, all of the simple things I used to be able to do, and now I realize that my life has totally turned around and what was "normal" just a few years ago, is certainly not anymore....
If you would like to participate in the Challenge Or just find ways to promote "Pain Awareness Month" you can go to :
http://uspainfoundation.org/30daychallenge.html
And do your own challenge or find ways you can let others know about just how much chronic pain can change your quality of life....
#ITookThePledge Twitter
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label National Pain Month. Show all posts
Showing posts with label National Pain Month. Show all posts
Thursday, September 3, 2015
Friday, August 14, 2015
National Pain Awareness Month in September and more from the US Pain Foundation Summit and Paul Gileno - Chronic Pain Takes so Much from Patients, Caretakers, Family & Friends Lives
Opening remarks are underway at the Advocacy y Summit with President & Founder Paul Gileno providing attendees... http://fb.me/4lxnrkEX0
Chronic Pain can take over your life, the life of family, friends, caretakers, and even cause hardships with relationships. It is truly a "home wrecker" and we have way too many people, especially in places of government that just do not understand the ills of chronic pain.
I am trying to do my part in September to raise Awareness on just how this life altering "disease" can control every move of your life, and how we need to stand up and educate others, including those around us, physicians, the medical profession, government officials, and this nation and world for that matter about the effects of pain when it becomes chronic and out of control.
As a pain patient myself, all too many times, I've been "pointed" at and felt as if I was some kid of criminal because I wanted to stop the pain... it cost me jobs early on in life (I began with chronic migraines at 17 years old)
In fact, even though I had other very severe chronic issues with my health, that finally led me at 43 years old to file for complete disability, the disability judge ruled in my favor for the number one paint of the migraines... I either had to quit a job, or after years on a job, would miss so much work with them, it led to me being dismissed from a job...
I worked from the time I was 16 years old, and yet I suffered year after year with those horrible headaches...
Ironically, the regular migraines got better about 8 years ago, partially due to my internal pain pump, but then after I was diagnosed with RA and Lupus, I began to have severe "Lupus migraines", that nothing will touch other than strong doses of prednisone...
Yet, my "chronic pain" as with many others goes far above and beyond migraines. When you deal with autoimmune illnesses, such as Lupus, RA, Sjogren's, and many others, pain is a part of your daily life. Oh, sure, with the right medications, the proper physicians, and all out there available now for pain relief, there are numerous ways to "control" pain. Yet, nothing will take it all away. Nothing will prevent it from sneaking up on you, when it is least expected, and become "intractable" or at the very least put you on the sofa, in the bed, or otherwise blindside you, when you are certainly not ready to deal with it.
When my Lupus and/or RA; along with several other health related issues decide to come calling, sometimes there is not anything that can be a cure... it may curb pain, but at that time, that is what it can do... make it tolerable... and that is very difficult to determine, because pain in itself is a complex illness and is different for everyone. What one person thinks is totally off the charts on the "pain scale" maybe at a 5 or 6 for someone else.
Each of us have the same chemical makeup when it comes to pain, but depending on the cause, what you are taking, why the pain is coming, whether from some physical ailment, such as a worn out joint, or a migraine, or from several joint problems, muscle spasms, stomach and intestinal pain, "acute" pain from an accident or illness... all have different ways of causing pain, and all have a unique way of developing.... and being treated...
Chronic Pain can take over your life, the life of family, friends, caretakers, and even cause hardships with relationships. It is truly a "home wrecker" and we have way too many people, especially in places of government that just do not understand the ills of chronic pain.
I am trying to do my part in September to raise Awareness on just how this life altering "disease" can control every move of your life, and how we need to stand up and educate others, including those around us, physicians, the medical profession, government officials, and this nation and world for that matter about the effects of pain when it becomes chronic and out of control.
As a pain patient myself, all too many times, I've been "pointed" at and felt as if I was some kid of criminal because I wanted to stop the pain... it cost me jobs early on in life (I began with chronic migraines at 17 years old)
In fact, even though I had other very severe chronic issues with my health, that finally led me at 43 years old to file for complete disability, the disability judge ruled in my favor for the number one paint of the migraines... I either had to quit a job, or after years on a job, would miss so much work with them, it led to me being dismissed from a job...
I worked from the time I was 16 years old, and yet I suffered year after year with those horrible headaches...
Ironically, the regular migraines got better about 8 years ago, partially due to my internal pain pump, but then after I was diagnosed with RA and Lupus, I began to have severe "Lupus migraines", that nothing will touch other than strong doses of prednisone...
Yet, my "chronic pain" as with many others goes far above and beyond migraines. When you deal with autoimmune illnesses, such as Lupus, RA, Sjogren's, and many others, pain is a part of your daily life. Oh, sure, with the right medications, the proper physicians, and all out there available now for pain relief, there are numerous ways to "control" pain. Yet, nothing will take it all away. Nothing will prevent it from sneaking up on you, when it is least expected, and become "intractable" or at the very least put you on the sofa, in the bed, or otherwise blindside you, when you are certainly not ready to deal with it.
When my Lupus and/or RA; along with several other health related issues decide to come calling, sometimes there is not anything that can be a cure... it may curb pain, but at that time, that is what it can do... make it tolerable... and that is very difficult to determine, because pain in itself is a complex illness and is different for everyone. What one person thinks is totally off the charts on the "pain scale" maybe at a 5 or 6 for someone else.
Each of us have the same chemical makeup when it comes to pain, but depending on the cause, what you are taking, why the pain is coming, whether from some physical ailment, such as a worn out joint, or a migraine, or from several joint problems, muscle spasms, stomach and intestinal pain, "acute" pain from an accident or illness... all have different ways of causing pain, and all have a unique way of developing.... and being treated...
Wednesday, September 17, 2014
PLEASE Start COMMENTING!!!!
I have lots to catch you up on over the next couple of weeks. I promise I will. I am on a new RA/Lupus medication, that is not a biologic. I will explain what my Rheumatologist told me, and how he has come to the conclusion, that if I can, maybe trying to stay away from a biologic, other than trying Orencia, would help to possibly reduce the number of infections I continue to get. I had been ill from way before Christmas last year, and was ill when I went to D.C. at the end of March! I was having a flare, but I was also I believe even then developing bronchitis that turned into double pneumonia. But, until I was running 104.5 degree temperature and almost out of my mind hallucinating from the high fever (I NEVER have a fever)... thus now I certainly know what to look for if I expect I might be having a new infection coming along.
I am so grateful to ALL of you who come here and read my blog posts. I know you do, and I see who comments and who does not. I will say that up until the last couple of weeks, there was not a good way I could see the comment if there was one, and I certainly had not a good way to see who commented at all, and what they said.
Now Blogger has made some much needed revisions in the Blogger software, and I just have to catch up as to what they have changed, and how I can use what they have done to make my blog even much, much better.
We have a few more things to work out with doctors, finding a "good" pain specialist for Jim and a Neurologist who will take his insurance and take care of problems as they arise. We think we may FINALLY have a couple of good referrals, but we shall see. When it comes to doctors, tests, hospitals, insurance companies, and pharmacies, you never know what the outcome will be.
I am still working on getting my jawbones strong and well enough to withstand the little mini implants that my dentures will snap down on those and be able to let me eat with them in and they not especially the bottom one coming falling out, I am getting there, but it is just taking patience to allow those all to fill in and heal before he can put those implants in and they stay strong enough, and my jawbone strong enough to hold them in. So, I still have at least until November to do X-rays and see where we stand.
I have just completed being a "Consumer Reviewer" that I had been nominated to do and then was asked if I wanted to do it, and of course I said yes. It was a true learning experience but it has provided me with lots of new avenues of advocacy, ambassador, and activist can mean, and how much my opinion and all of our opinions Do MATTER!!!!
On Monday, Jim's birthday.... the 22nd we have an appointment at our lawyers office to go over what will be going on for the depositions. Then on Tuesday we go back in and give our depositions. Since it is in Ft. Worth, our plans are to stay the night, and possibly go out to eat or something in celebration of Jim's birthday... and who knows... we maybe also celebrating the nightmare of this wreck stuff to finally be coming close to an end... and it coming out in our favor in a very huge way!!!
It is a bit nerve racking, thus I have not talked about it much. I just felt until we are close enough to possibly know when we will know the outcome. So keep us in your thoughts and prayers, as Monday and Tuesday are very significant for us in regard to possibly getting favorable results from the law suit.
I shall put on more tomorrow... as I get some of my other
chores out of my face...
Hugs, Rhia and by the way.. once and again, thank you my dear friend for taking a moment to post here :)
I am so grateful to ALL of you who come here and read my blog posts. I know you do, and I see who comments and who does not. I will say that up until the last couple of weeks, there was not a good way I could see the comment if there was one, and I certainly had not a good way to see who commented at all, and what they said.
Now Blogger has made some much needed revisions in the Blogger software, and I just have to catch up as to what they have changed, and how I can use what they have done to make my blog even much, much better.
We have a few more things to work out with doctors, finding a "good" pain specialist for Jim and a Neurologist who will take his insurance and take care of problems as they arise. We think we may FINALLY have a couple of good referrals, but we shall see. When it comes to doctors, tests, hospitals, insurance companies, and pharmacies, you never know what the outcome will be.
I am still working on getting my jawbones strong and well enough to withstand the little mini implants that my dentures will snap down on those and be able to let me eat with them in and they not especially the bottom one coming falling out, I am getting there, but it is just taking patience to allow those all to fill in and heal before he can put those implants in and they stay strong enough, and my jawbone strong enough to hold them in. So, I still have at least until November to do X-rays and see where we stand.
I have just completed being a "Consumer Reviewer" that I had been nominated to do and then was asked if I wanted to do it, and of course I said yes. It was a true learning experience but it has provided me with lots of new avenues of advocacy, ambassador, and activist can mean, and how much my opinion and all of our opinions Do MATTER!!!!
On Monday, Jim's birthday.... the 22nd we have an appointment at our lawyers office to go over what will be going on for the depositions. Then on Tuesday we go back in and give our depositions. Since it is in Ft. Worth, our plans are to stay the night, and possibly go out to eat or something in celebration of Jim's birthday... and who knows... we maybe also celebrating the nightmare of this wreck stuff to finally be coming close to an end... and it coming out in our favor in a very huge way!!!
It is a bit nerve racking, thus I have not talked about it much. I just felt until we are close enough to possibly know when we will know the outcome. So keep us in your thoughts and prayers, as Monday and Tuesday are very significant for us in regard to possibly getting favorable results from the law suit.
I shall put on more tomorrow... as I get some of my other
chores out of my face...
Hugs, Rhia and by the way.. once and again, thank you my dear friend for taking a moment to post here :)
Friday, September 24, 2010
Series of Videos From the American Pain Foundation - These are very beneficial
http://www.letstalkpain.com/painmedsafety/
Once again the American Pain Foundation has come through with great information for all of us suffering from chronic pain. This series of videos goes through how medications effect our lives, the positive aspects of controlling pain, from medications to the use of implantable pain devices, all of these are full of informative and good information for pain patients, spouses, caretakers, family and friends. I urge you to take a look and listen to a few of them. I have already listened to numbers 5 and 6, about the implantable devices, since I am facing having a pain pump put in very soon.
I already learned a great deal more, than I already knew from my own research. :) Rhia
Once again the American Pain Foundation has come through with great information for all of us suffering from chronic pain. This series of videos goes through how medications effect our lives, the positive aspects of controlling pain, from medications to the use of implantable pain devices, all of these are full of informative and good information for pain patients, spouses, caretakers, family and friends. I urge you to take a look and listen to a few of them. I have already listened to numbers 5 and 6, about the implantable devices, since I am facing having a pain pump put in very soon.
I already learned a great deal more, than I already knew from my own research. :) Rhia
Why Always Reporting the Negative side, and never the positive aspects of pain medications?
http://www.nytimes.com/2010/09/24/us/24drugs.html?_r=1&th&emc=th
Yes, another article negatively impacting prescription pain killers from a prominent paper, the New York Times. What I just don't understand is why they are NOT telling the other side of the story, which is how so many people are given their quality of life back, due to these types of medications. Here we are in the middle of National Pain Awareness Month, when positive things should be discussed and told, yet just about every media type, every news station, many newspapers, & other media have chosen to skip over the good news, and put the bad and ugly in words and reports. This is truly infruiating for those like myself, who are true chronic illness and pain patients, we have NO issues with abusing, addiction, stealing, lying, or being one of the "bad" guys, yet this type of representation reeks havoc for our future quality of life. Please join me in making sure we continue to get the GOOD news out about our medications and all the positive ways they affect us.
Thanks so much, Rhia
Yes, another article negatively impacting prescription pain killers from a prominent paper, the New York Times. What I just don't understand is why they are NOT telling the other side of the story, which is how so many people are given their quality of life back, due to these types of medications. Here we are in the middle of National Pain Awareness Month, when positive things should be discussed and told, yet just about every media type, every news station, many newspapers, & other media have chosen to skip over the good news, and put the bad and ugly in words and reports. This is truly infruiating for those like myself, who are true chronic illness and pain patients, we have NO issues with abusing, addiction, stealing, lying, or being one of the "bad" guys, yet this type of representation reeks havoc for our future quality of life. Please join me in making sure we continue to get the GOOD news out about our medications and all the positive ways they affect us.
Thanks so much, Rhia
Monday, August 30, 2010
National Pain Awareness Month - September
The American Pain Foundation is sponoring National Pain Awareness Month for September. Along with that they have a pain awareness "virtual march" on Washington DC you can participate in. There are many ways t help out in this critical area of much needed research, funding, awareness, clinical trials, and much more.
If you are a pain patient, a caretaker, friend, neighbor, family member, or someone who just wants to help joint the fight against chronic pain, and be a positive voice please visit the American Pain Foundations Website. I have enclosed their URL.
Chronic Pain is a life altering illness that effect millions of us every year, and that rate continues to grow. There is still so much that is a mystery when it comes to many chronic illnesses and chronic pain. We lose many hours from work, we suffer horribly, we sometimes lose our jobs, families suffer, spouses suffer, and life itself has many limitation due to chronic pain. I hope you will join me in advocacy, awareness, and doing what you can to help solve the mystery of chronic pain.
http://www.painfoundation.org/take-action/action-network/virtual-march-2010.html
If you are a pain patient, a caretaker, friend, neighbor, family member, or someone who just wants to help joint the fight against chronic pain, and be a positive voice please visit the American Pain Foundations Website. I have enclosed their URL.
Chronic Pain is a life altering illness that effect millions of us every year, and that rate continues to grow. There is still so much that is a mystery when it comes to many chronic illnesses and chronic pain. We lose many hours from work, we suffer horribly, we sometimes lose our jobs, families suffer, spouses suffer, and life itself has many limitation due to chronic pain. I hope you will join me in advocacy, awareness, and doing what you can to help solve the mystery of chronic pain.
http://www.painfoundation.org/take-action/action-network/virtual-march-2010.html
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo...
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...