I spend a lot of time on social media these days pleading for one thing; empathy. I ask for it when it comes to anything political. I ask for it when it comes to all of those immigration issues. I ask for it when it comes to issues of faith. I ask for it when it comes to any hot button issue really. I always try to see the human side, how people must feel in those situations, what it took to get to that state, and ask people to put themselves in those shoes. I think a lot people these days just type their initial feelings and just forget to do that. It’s always good to put thoughts into words before writing that stuff down. As I implied in an earlier blog post, this stuff is permanent and it saves a lot of grief.
But how did I get like this? Probably because I live one of those hot button issues every day.
I am severely, chronically ill. I have dealt with severe migraines all of my life. Those are now mostly controlled with 36 Botox injections to my skull every three months. In 2013 I had my first bout of genetic pancreatitis. Two-and-a-half years later, I lost four organs to the disease in a 13-hour surgery and islet cell transplant. Severe abdominal pain and fibromyalgia from that surgery followed, as well as Type I Diabetes. Then this past year, an MRI revealed white spots and plaque in my cervical (neck) area. I now find myself under evaluation for Multiple Sclerosis.
My entire body is in severe pain 24 hours a day, seven days a week. My hands, knees, hips, and feet feel like they are severely sprained to broken. Imagine walking around with the feeling of an untreated broken bone every day. That’s what I live with. I can no longer open jars or water bottles most days, my kids do it for me. There are days I cannot put weight on one foot. There are days I am bedridden. At least once a month I find myself in the Emergency Room for pain relief. I don’t get admitted to the hospital much anymore. The inpatient doctors are actually pretty mean and don’t help me anyway.
I have tried pretty much everything under the rainbow for relief, and still continue to try. I use compression bandages. Sometimes they help the pain, sometimes they make the area swell and make the pain even worse. That may be an indicator there is significant nerve damage in some areas, and I just won myself further testing (UGH!) I have stock in Salon Paws and Icy Hot. They don’t work, but I still continue to use it in the hopes someday it will. I use more ice packs and heat than anyone ever should in life.
And yes, I tried “medical marijuana.” The “high” from it is kind of overwhelming for me. I can’t take care of my kids with it. As of right now, it’s a no for me.
That leaves opioids. It’s what I’m currently on, and it works for me. They allow me to get up and take care of my family. They allow the pain to stop temporarily, at least enough to get a few things done. For me at least, there is no high. I can safely say I have never gotten high on them. Probably because my personal pain is so severe that they just do their job to stop that pain and that’s it. Without these medications, I’m not getting out of bed, let alone doing anything around the house, taking care of my children, or being any kind of productive member of society.
However, the current opioid crisis in the United States leaves people like me in fear and my care in constant danger. In 2016, The CDC released new prescribing guidelines for opiates for chronic pain patients to address the large amount of drug overdoses and deaths due to opiates. Unfortunately, most doctors, hospitals, states, and insurers now take these guidelines as mandatory rules. As a result, most doctors and emergency rooms no longer prescribe opioids, and you can only get them through pain management clinics, and many of those under-prescribe due to the guidelines or treat chronic pain patients like drug seekers. They also can and do kick patients out for any small reason they deem fit. Never argue with them, never be late or miss an appointment, never not take all of your medication with you to appointments or do anything they deem out of the ordinary. Never not sign the pain contract or take their mandatory tests. It’s a climate of fear just to get what little relief you can get.
At the current pain clinic I am at, I am actually getting a decent prescription of good medication, and I am getting relief, but I live in fear of messing up a test, or missing an appointment, or doing something wrong just out of human error and getting dropped. Due to my illnesses, my memory is awful now. Add fear and a crazy schedule of children on top of that, and it’s almost a recipe for disaster. I don’t want to mess this up.
More laws come down from the CDC and Attorney General every day further restricting legitimate pain patients’ access to their medication. If I am not able to get my medication, I may not be able to function. I am only 41-years-old. I do not deserve this. My children don’t deserve this. I do not deserve to suffer because others did not use my medication responsibly. There has to be a better balance.
The vast majority of opiate-related overdoses are street-bought heroin and fentanyl drugs, not prescription opioids. Yes I realize people can start addiction on these prescription drugs, and my heart does go out to them and the families who have lost loved ones, but to swing so far to the other side that legitimate chronic pain patients have to have their care cut off is not the answer either. You may very well send these same chronic pain patients to the streets too if you cut them off from doctors who can treat them.
It all goes back to my main point of empathy. None of this should be an argument. We should all care about those who are addicted and dying due to the opioid crisis. No one makes a choice to become addicted. No one makes a choice to live or die like that.
We also need to have empathy and understanding for the millions of chronic pain patients who still need opioid medications to relive blinding pain that takes your breath away. If you don’t have that pain, you can’t step in and suggest alternatives, and please don’t. You aren’t helping. No one wants to be on these medications, so further shaming them doesn’t help either. The ever-tightening laws are also making them, and me, suffer more. The whole point is for us to feel better. With the ailments I have, I won’t ever get better. I accept that and I live life the fullest I can, so at least give me some moments to feel better, and please allow me and others in my situation to do that as well. Don’t judge. Write your lawmakers to fix both sides of the opioid crisis. Truthfully, they aren’t helping anyone involved.
I am a mom with severe chronic pain on opioids. I am a better person because of it. Have empathy. Don’t judge. Help me and others like me out. We would lend you a hand, even in our current condition, in a heartbeat.