I used to wake up in the morning with hope in my heart. I would think, “This is just a bad dream. I won’t really have all of this pain for long. It will go away! This has to be temporary. After all, who could live like this? Who could live in so much pain everyday?”
In the beginning I had aches and pains, always migraines, my legs hurt badly. My fingers hurt. My feet hurt. That’s all. It must have come from having had Histoplasmosis. It will go away tomorrow!
But it didn’t go away. It just got worse.
Now every morning I wake up to face a tremendous daily fight, a chronic fight, a sad and hopeless fight. Because after 31 years, I know this is not a bad dream. It’s a nightmare. I live in it. I am the star, I was chosen as the main character. And I think I should get an Academy Award. That’s because I am 100 times worse off than when I thought this was just a bad dream.
When I was young, my primary doctor didn’t know what to make of my complaints of pain, so I was sent to a neurologist. He diagnosed me with Fibrositis, the name used before it was called Fibromyalgia. He said it happens to women in their 30’s but it will go away. It will go away tomorrow, I thought. Eventually there were times that I could barely walk for the pain in my legs and feet. I would (and still do) lay in my bed and cry because my entire body hurt so badly.
I have felt so sad. I used to be an energetic mother, a thriving business owner, a daughter and caregiver, an ex-wife:), an exerciser, a camper, hiker, skier, skater, runner, sailor and fun to be around, with a plethora of friends. People in chronic pain lose all of that. ALL OF IT. We live with anger, isolation and fear. And there are people out there in the free U.S. government who want to make our lives worse?
My mother took me to the Mayo Clinic. Surely the doctors there would have answers. I was sent around via wheelchair to doctors and labs for three days, then diagnosed with Fibromyalgia. They said I had the “worst case” they had ever seen.
Later I was diagnosed with more — rheumatoid arthritis first. Some deformities started in my toes and fingers. I’ve had surgery to remove joints and repair my thumb/wrist, and my toes. They still hurt. Now, after having been diagnosed with Lupus, my feet are more painful and there are additional side effects. Some include peeling skin, rashes/hives and tremendous weakness at times.
I began to have horrible back pain until finally I got “stuck” and went to see my doctor about it. I was diagnosed with degenerative disk disease (which has now progressed and the pain in my back is excruciating if I do anything other than lay in bed). I have sciatica, spinal stenosis, scoliosis and bone spurs touching the nerves by my spine. I am getting a wheelchair now so I can go out places with friends. I have been staying home for months because I know how badly it will hurt if I try to go to a movie or go shopping, or do something fun once in awhile. I dread the chair…and I dread what comes next — the electric chair. I’ll have one of those when my back gets stuck for good, and I stop moving. That is the prognosis given me by my doctors.
It’s Not Just Pain (What People Aren’t Telling You)
Living with pain is only a part of what happens to a body when chronic disease strikes. There are always side effects of chronic disease. I have had my share. Migraines, frequent fevers with the aches of a bad flu, stomach problems every day, irritable bowel syndrome, foot problems, vision changes, nausea so bad I lay in bed and don’t dare move, difficulty concentrating, embarrassing memory problems, restless leg syndrome, and more. In fact, I never feel good anymore, ever. I feel sick everyday as I live with pain and its side effects throughout my broken body. (When you have diarrhea every morning for several hours and sometimes all day, and when you have uncontrollable restless leg syndrome, opioids are the last resort medication. For me it is now the only thing that helps. I can’t imagine restless legs and arms all day everyday. I would simply and quickly go insane.)
You, the CDC!
You have gone a long way in threatening the very lives of me and my fellow pain sufferers. You have frightened so many. The doctors, the pharmacists, the companies behind them. And you have frightened us into wondering if we will have to commit suicide or ask for suicide assistance if you get your way. You know why? Because it is difficult enough to live in the pain we still have even with our opioid medications, and we cannot possibly imagine living in the pain we would have without them.
You started another nightmare for me, just when I was thinking that I would be a little alright to welcome my new grandson into the world in June, and hold him in my arms and sing to him; I would be alright to live independently for a little while longer. (I imagine the nursing home sometimes. I live on the disability wage, so I would be in a state-run home, and I would be the noisy one screaming and crying in my bed, while in my mind somewhere deeply I can still imagine writing, and traveling back and forth to Minnesota, (with assistance and my dog), and going to a play. I can imagine all sorts of things.)
But I will know that It was you who took away those rights from me and millions of others. It will be you that I would want to attend the funerals of those who couldn’t take it anymore. And it would be you who played doctor and someday would pay for it.
I think I know you now, for I have read and studied what and who you are. You put out suspiciously timely press releases on drug addiction that make it look like those of us who take opioids are going to go on to take heroin and become addicts. That, just on the heels of your re-opening this comments section for people to express their concerns. You make sure the U.S. media from small-town newspaper to network news says what you say — that chronic pain patients are drug addicts and opioids should not be a part of any pain treatment plan. You spend your PR money swaying the country to one side so that we have to work tirelessly to scream out in our little voices, “But no! You have it wrong!”
Why are your interests pointing toward illegalities in the people you chose to committee this? Why do you want controls you shouldn’t possess? Why don’t you understand that we are not the drug addicts and only a tiny percentage of opioid patients will become addicts and the drug-seeking addicts will still get their drugs if you do this? And finally, why do you not have some of us on your panels and committees and put before government houses to whom we can speak? Your plate is full. And you will spill. And the mess will be yours to clean up. Because this isn’t going to go away tomorrow!