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I have 8 how many do you have?
Somewhere inside that hurting body, there is something better, something stronger, something real.
R. M. Drake
That paralyzing fear
When I have a bad day my heart always skips a beat. Seven years ago I was completely bed-ridden, unable to do the simplest task for myself, so when I have a bad day my heart really skips a beat. I fear that I am going back in time and am reliving all that pain and anguish. I have to remind myself that this is just a bad day, not a bad week or month or year, just a bad day. Now that it’s cold outside the bad days are coming more and more often and those fears are paralyzing, am I going back to what I was? Logic says no, my mind says no, my heart still skips that beat and the fear does not stop until it reaches my throat.
My letter to my congressmen on the opioid crisis
First let me predicate this by saying that I acknowledge that there is an opioid problem in this country, and that countless Americans are affected either personally or by association, but may I be the voice of reason on another side of the dilemma. I am a long term chronic pain sufferer. I have a pain management doctor whom I have been working with for years, we have tried spinal injections, spinal cord stimulators, and morphine pumps. I have had 3 life threating infections and over 30 operations to combat this problem. I have CRPS for which there is no cure. I have only management in my future and I have been living with this for 16 years.
This newfound interest in this opioid crisis has caused me and others like me to suffer needlessly. My doctor used to be able to make me comfortable enough to give me back some quality of life that I had before my diagnosis, now I am forced to live on half the medication that I was on before the new CDC guidelines went into effect. I fear it will only get worse. The scariest part of the opioid crisis is the movement to change the CDC guidelines from “voluntary” to “enforceable” unless complex bureaucratic barriers are climbed and unfortunately most doctors are not willing to jeopardize their careers and climb these barriers for the best interest of their patients. With a threshold of 90 milligrams of morphine equivalent per day many of us will lose access to the vital medicines that we are currently taking. The unfortunate part is there is no evidence that taking a stable pain patient off or dramatically reducing the amount of narcotics they receive helps said patients or solve the problems of the opioid crisis. What is happening throws me and others like me into an involuntary experiment, one that leaves us with our lives on the line. This new found interest in the opioid crisis has taken what “normal lives” we mapped out for ourselves and thrown them into chaos leaving us three undesirable choices: first, reduce the quality of our lives and no longer be able to function in any capacity, unable to work and forced to live on disability; second, resorting to street drugs which compounds the larger problem; and finally, unfortunately all to often suicide. The new guidelines and enforcement leave doctors in fear of investigation or sanction, they have to make a choice between caring for their stable patients or facing a bureaucratic strangle hold and losing the protection of their profession. In other words everyone loses.
Please believe me when I say there are 6-8 million chronic pain patients in America that are faced with this dilemma each and every day and there is not one of us who would not gladly give up their narcotics for a cure. My greatest fear is that this “opioid crisis” is going to leave millions of chronic pain patient’s bodies in the streets of America and everyone will just shake their heads and say “it’s an unfortunate situation, but they are casualties of war”. I want nothing more than to get my quality of life back, to get off disability and to become a productive member of society again. I make so little in disability that I sometimes have to choose between medications and food, so let me reiterate I WANT A JOB, but I can’t even think about it at my current pain level.
This is my long sad story, and I am reaching out to the one person that could potentially help me. Will you PLEASE HELP US GET OUR LIVES BACK?
(please write your congressmen, if we all weigh in together maybe we can change things)
Just got out of the hospital and finally able to sleep.
From one pain patient to another
For all those out there who suffer daily with chronic illness/pain
Who suffer every day in silence and alone
Who have illnesses that are invisible to others
Who can’t sleep at night
Who have pain flares on a regular basis
Who are criticized by family and friends
Who are told that they are making up symptoms for attention
Who are told that they are lazy
Who are told “at least it’s not serious”
Who aren’t given respect by the medical community
Who feel isolated and alone
I see you! No one can ever know what you go through on a daily basis, the indignity you suffer, the feeling of hopelessness and loss unless you have been there. So if you are thinking of giving up, please don’t. Reach out to someone who understands whether on a website, by phone, or blog. Just don’t give up there is a whole community of us out here who understand and can offer support and guidance. You are amazing, you are heroes, and you are valued.
