Outstanding outstanding will share and share
Update 6/27/18: I am overwhelmed by the positive responses I have received for this letter. I would ask that readers also take a look at all the articles and references cited in this piece, and share those as well. Those references go into much, much more detail and research than I have had space or time for here. Thank you all so much for reading and sharing, I believe we will make a difference and win this fight for our lives! #wearehere
Dear Dr. Kolodny,
I am one of millions of chronic pain patients in the United States who has been continually and increasingly oppressed over the past few years by progressively invasive and prohibitive laws at the state and federal levels concerning the delicate relationship between doctors and patients…
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I am living with a beast, who is cold, heartless, unmerciful, uncaring and cruel! Always, lurking around me making my life so challenging, so exhausting and beyond all so painful not only physically but mentally spiritually and emotionally!
This individual has taken so much from me. I hardly remember how it was before coming into my life! No, that is a false statement! I remember I remember well! Before this individual came into my life, I was functional I was happy!
Of course, I had challenges and difficult times. But, I could cope! I could manage! However, since I have had to deal with this horrendous evil vindictive individual. I live day in and day out in my cave (my bedroom) my bed I hardly or rarely ever venture out anymore! 98% of my life is spent here! I’ve become so isolated and alone so different from the life I used to live! I remember prior to coming into my life I used to hardly ever be in bed except to get my minimal rest!
I wish that I would have swallowed and drunk up and absorbed the greatness and beauty of the life I had.
Versus taking it for granted!
What I wouldn’t do or give to go back to that time!
I mourn me, I miss me, I know my kids and my grandchildren miss me. The woman I used to be so energetic, vivacious, outgoing, industrious, loving, friendly there wasn’t a person that could walk by me without me engaging in some kind of banter I loved life so much more then!
I am attacked when I least expect it making my life sheer misery and Hell! I have no way of knowing because it is always present, always lurking around! This has hurt my family, my career, my outlook and my sense of self! I am followed everywhere never a reprieve!
When angry, my day’s are hell and my nights sleepless. I am attacked when I least expect it, especially if I feel a sense of security. Behind me, beside me, everywhere, every day to the point where I truly cannot remember a time that I lived totally out of its grasp
This fiends name is PAIN
Pain is brutal, savage and barbaric at times. Pain cares little for family occasions, social events or holidays. Pain forces me to stay home, pain makes sure it is ever present, right there with me, ensuring I don’t forget its brute presence for a second.
Pain has been a silent witness to some of the most extraordinary and excruciatingly painful moments of my life.
There are so many who live with this insidious beast, just like I do. We do our best to keep on living despite pain’s germinating presence. You never become immune to the tourtourous, aching, stabbing, aching suffering pain brings regardless of how long you live with it!
Prior to the 2016 guideline, I had a life! I bet your thinking, but you do have a life obviously or you would not be able to tell your little story?
Yes, I am trying to learn that this is my new normal and am trying to continue on with my life. ”I try to smile, laugh and engage despite the struggle, strain and toil it causes my body to display. But, I feel like I have been robbed!
I NEED TO TELL THOSE WHO DO NOT HAVE
CHRONIC PAIN A LITTLE SECRET!
IT HURTS, ALL DAY, EVERY DAY 24/7
365 DAYS A YEAR!
IT NEVER STOPS!
IT NEVER ENDS!
YOU EAT, IT HURTS!
YOU SLEEP, IT HURTS!
YOU JUST EXIST, IT HURTS!
YOU WAKE UP, IT HURTS!
YOU REST, IT HURTS!
YOU BREATHE, IT HURTS!
EVERY SINGLE ASPECT OF EVERY SINGLE
DAY, IT HURTS, IT HURTS, IT HURTS!
And now without my essential tools (my medications) that gave me functionality, and any kind of quality to my life which has diminished 98% due to CDC Guidelines,
I truly don’t know how much longer I can stay in this fight, this maddness, this torment, this torture, this life?
Constant and chronic pain isn’t something you can deal with
at least not to the degree I have it, for a long period of time! My organs are starting to shut down…
I am blacking out constantly due to such high pain thresholds.
I am having cardiac issues!
I am in so much pain 80% of the time,
I pray to God to take me!
I have even begged, begged my adult children to
please, not be angry with me if I take my life! I want to be here! I want to see my grandbabies grow up. I want to enage in life again! I made a difference in peoples lives…
I use to be a parent’s last hope for true help and success when I had access to my medications.
Because I was a special education advocate…
and I was good!
I knew those feelings of desperation not knowing where to turn what to do for your child…
The one thing in this world you love more than
I LIVED IT!
So, I began to educate myself so I could be the best dammm advocate on the planet because baby, the school system,
the government don’t really give a shi* about bridging that gap that they are deficient in no, no, no!
esp. in Autism, please!
They play like they do… but it all about the $$$$$
Long story short I would never, ever take no for an answer with my child or those I advocated for!
I did change lives!
I just wish the government, our families, friends, society etc…
would see us as human beings, with value!
Anyways, this turned into something I wasn’t expecting lol what else is new giggle, giggle
Please just know we are fighting a battle you that do not have chronic pain have and never can come close to comprehending so please be more compassionate, more loving, more accepting of our limitations!
No one would ask or want to intentionally live in this hell, this madness! I promise you!
Thank you for reading!
Chronic pain is actually a massive issue. I don’t think anyone can say otherwise. My body certainly agrees with this statement. The numbers concur.
It is also a complicated, poorly understood, problem. I have seen a lot of recent research and it is fascinating but, clearly, a long way to go. But getting somewhere for sure.
So then comes the opiate epidemic. And the government gives a damn alright. About addiction. I could get right into how a lot of people addicted don’t even come from prescription drugs or that people in chronic pain account for a wee teeny fraction of people addicted to opiates… but I will say more along the lines of this: there was some give a damns out to give and none were given to people with chronic pain. That those to suffer the consequences of the opiate epidemic were the ones suffering quite enough already.
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“It is a unfortunate situation where chronic pain patients have to suffer, literally, for a crisis they don’t own. 100 million people in the US have chronic pain, and some of them need opiates for effective pain management. Of course, many of them now no longer get that. I question whose conscious the rise in suicide rates in that population that should rest upon. I live in Canada and similar policies are coming here. One problem simply amplifying another. What a vile horror to leave people suffering like that, without alternative and effective pain management strategies in place before they do so. Trying to resolve the suffering of some does not justify causing the suffering in others. It just doesn’t. #Painmatters” Nikki Albert
That was my response to a particular topic on the opiate epidemic. And shortly after I wrote this tweet:
When pain patients don’t own the…
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- A smile hides pain quite well. It doesn’t negate it.
- This façade is fake, the pain is real.
- You not believing my pain doesn’t invalidate it’s existence, just makes it harder to deal with if you mean anything to me. If you mean nothing to me, then likely you never will with that attitude.
- Just because I can do something one day, doesn’t mean I can the next. Pain is variable. It can be severe or sometimes more tolerable. It takes a lot of effort to do things because pain is fatiguing and requires recovery, but other times too much pain and I cannot function.
- Painsomnia is what we call not being able to sleep from pain alone.
- Paingry is what we call being angry because of the pain. Just being in pain and angry about it. Frustration and irritation can be taken out on others, or not. But it…
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I have been a slave to pain beyond my control before but this vestibular migraine symptoms… never have I had symptoms like these steal my functionality to the point of mental stagnation.
I can’t do housework. I do maybe one thing every three days much to my immediate regret. Standing and walking is Effort.
I can’t read for pleasure because eye tracking is hard, focus is difficult and mental concentration isn’t there.
I can’t do creative writing for the same reasons I can’t read. It makes blogging difficult enough. I have scheduled some pre-written research works for this reason.
I can zone out on social media but it is hard to focus. I feel like it is at least one distraction I have available to me but I tire of it.
I can zone out on Netflix. And this isn’t bad since laying down I feel the best. But I…
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