With all the “bad” press about opioids on how bad they are for you and you will become addicted to them, turn to street drugs and die, it is no wonder doctors are scared to prescribe them to people who actually need them. Yes opioid medications in the wrong hands, prescribed carelessly or for the wrong reasons can certainly be a problem, no denying that. But what about the percentage of people who truly struggle with chronic pain conditions where other medications and therapies have failed to help? What are they supposed to do? Maybe we turn to “street” drugs? I can’t afford my regular medication; I don’t know how I would pay for illegal drugs.
I just do not feel good. I’m in constant pain, chronic pain. I have struggled to find anything that works as well as these “bad” medications. I’ve tried lots and lots of different medications over the past 8+ years. Nothing has ever worked even close to the opioid medications. So am I a bad or evil person for that? My quality of life at this point is not the greatest. Nothing like spending lots of you day hoping and praying the pain will go away. Lots of us who suffer with this chronic illness could write a book about everything we have and continue to go through on a daily basis, physically, mentally, emotionally and financially. Will it ever stop?
At this point I only have a decent family Dr and a good endocrinologist. No GI that I’m allowed to go to won’t even see me anymore, I’m to complicated. Most doctors I have worked with in my treatment have a very limited knowledge of my condition, tell me to just take Ibuprofen, Tylenol or combination of both. First, they don’t work well for my pain. Second I have been told by to GI doctors that I shouldn’t have Ibuprofen or aspirin because it is so hard on the stomach and GI track. Because I have had major surgery on the GI system, I have been told to stay away from that so that I don’t develop an ulcer or have bleeding from the reconnected areas. Tylenol is almost as bad but can be used in infrequent cases for a headache or such. Tylenol is hard on the liver and that is where my islet cells from my transplant now reside. For that reason the GI experts say stay away from Tylenol as much as possible. So what other options are there?
These are by no means the only things I’ve tried. I’ve also tried massages, acupuncture, yoga, meditation, CBD, medical marijuana and so on. I’ve tried to eat differently and change my diet which certainly does help my diabetes but does nothing for the pain. Just imagine with every bite of food you take the pain increases. That’s pretty much my dilemma at this point on top of several other issues.
Counseling is an option but is limited in my opinion. I have worked with several different counselors and psychiatrist over the past 8 years. Not one of them understands the physical pain and chronic illness I deal with every day. Some try but it is hard for them to grasp the amount of pain. They will say things like “fake it till you make it”, “your mind can override the pain”, “just think happy thoughts”, “you need to have more positive thoughts”. I really wish it was just that easy. Counselling has helped with some things but it does absolutely nothing for the pain. Less stress! Well with my health that is difficult. Imagine the kid in the airplane seat behind you kicking the seat but everytime they do you also get jabbed with a sharp object in the back. Now this never stops! Maybe they get tired for a while and slow down but start right back up again. Stressful, annoying and painful! 24/7. Every time I eat something my pain increases. Going out isn’t exactly a lot of fun sometimes. Add the stress of how I struggle to figure out how to pay for medications, I lost my insurance this year which makes it even more difficult now and I physically struggle to do things around the house. I can guarantee that if you fix my pain, my mental health will improve! What a f-ing concept! But no, they want to give you a bunch of other medications to “change the chemistry in your brain” and make you happy. The side affects of those are just wonderful and add to my anxiety and depression! Shhhhh don’t tell them that, they don’t like to hear that.
Next option, many say turn to God and pray for relief. He sees your pain and understands what you’re going through. You don’t think I started doing this over eight years ago when I first got sick? I’m not so sure about that, if that was true why wouldn’t he do something about it? Why does he let so many people suffer in pain. Trust him and his plan? So his plan was to watch me and so many others suffer? That gets really difficult when there are so many days you can’t see the light at the end of the tunnel because of the pain. And yes I’m talking to and talked to pastors, read many books and the Bible trying to figure this out. God bless you if praying helps you, it just hasn’t helped me much. And please don’t tell me you know exactly what it’s like, what I’m dealing with. No you don’t! Maybe you have something similar but everybody’s different and anybody that has an illness or chronic illness handles it, feels it and deals with it differently. Maybe God wants me to have the pain medications?
People think that I am still grieving losing Karen, yes I am and always will but that isn’t the main issue anymore mentally. Mentally all the above is much harder. I don’t write this blog expecting anyone to change something that will help make it better. I have tried suggestion after suggestion from family, friends, medical personnel and so on. There is a lot of the frustration, there are few good answers. Yes there are days I can fight through it and accomplish some things but it’s always at a price! Usually by costing me much of the next day in bed or on the couch.
I’ve talked before about how this illness and chronic disease has changed me. People don’t like to hear that or want to acknowledge it because it isn’t a good outcome. I don’t like that I’ve become who I am, I’m angry, bitter, hopeless many days but mainly just struggling with pain. Joy is a difficult thing to find most days or it is very short lived. I’m thankful for the support I have from a few people. Many days they keep me going when I don’t want to.
I don’t expect anything to change. Doctors are not going to be allowed to prescribe or be willing to prescribe the proper medications for those of us who truly need them.
So now what?
Dan's fight with Hereditary Pancreatitis 