Through a series of unfortunate health mishaps, I became quite disabled. I am better now (mostly emotionally), but it’s been a long, slow, slog, through the medical community seeking help, and relief. I will most likely never again be that bouncing bunny of energy I used to be. My daily routine is about managing my energy and pain levels. The better I get at that, the more likely it is that you will not even know of my suffering when you meet me. Hopefully, you will be greeted with a big smile, an encouraging word, and a warm hug. I don’t want the conversation to be about Me – how terribly boring. I want it to be about whatever wonderful things we can discuss or do together. In this article, I will share with you my journey to get off the pain meds and stay off them.
There are two reasons I think this is an important topic. Firstly, what happens when you can’t get the drugs your body has become dependent upon in order to function? Secondly, while the drugs mask the pain, their side effects include severe brain fog and loss of some bodily control functions. The pain killers sure feel like miracle drugs until you can’t get your prescription filled, or you find yourself shopping for Depends.
I’m not going to spend time here describing my various illnesses, but let’s just say “The old gray mare just ain’t what she used to be”, and leave it at that. I also want to state upfront, that I am not against traditional medicine – traditional medicine saved my life, at least twice. It’s very difficult to find the right team of doctors, and especially when you can’t think straight and are in a lot of pain with no energy and tolerance left. May God bless all of you who have been down that path! It works best when you have one or more Advocates, who have your best interest at heart, and who help you maneuver through “the system”. And best when a few of them stick by you for the long haul. I was very blessed to have several family members who basically took over my life for a period of time, got me to doctors’ offices, the infusion center, picked up prescriptions, kept track of the paperwork and insurance billing, shopped, and cooked for me, helped me bathe and brush my hair, and listened to me even when nothing I said made sense. I am forever grateful for them.
MY EXPERIENCE WITH PAINKILLERS
I am going to share an honest look at my experience with painkillers. (Unpleasant memories!). Remember, I am not a doctor, nurse, or anything close to it. I do not judge anyone who needs painkillers. I am not advocating for anyone to do anything – that is between you and your doctor. I am simply sharing my personal story, and the reasons why I choose to take as few pharmaceuticals as possible.
There are some drugs in the pain medication category that can make you feel like you are floating on air. You feel warm, comfy, and happy… until the drug wears off and it’s time for another pill. While on these particular types of pain medication, the pain seemed to hit a little harder as the days progressed, and I felt as if I was “getting worse”. And it could be, but it’s also likely that I wanted to be out of pain, and stay out of pain. Anyone would rather feel warm and happy rather than achy and breaky. I learned, that over time, I didn’t get the same pain relief effect from the drugs that I did initially. I honestly thought that the pain was worse and the pills weren’t strong enough. I thought this because I didn’t understand the dynamics of physical addiction. I’m not to blame at all! No doctor explained this to me, so I didn’t know. (A doctor may up your dosage and soon you feel relief again. At some point though, your doctor will no longer up the dosage.) As a matter of fact, I was not prescribed pain medication until after I had gone through a series of x-rays, ultrasounds, and MRIs, over a period of some time, saw numerous specialists, and it was finally agreed that there was good reason for the pain I was experiencing. I think by the time I finally got a prescription, I was very much looking forward to stopping the pain.
Then, one day, I went into the pharmacy to refill some prescriptions. A rather young pharmacist asked to see me at the window. She said, in no uncertain terms, that she would fill part of my prescription, but she would never refill it, and also that I was not welcome at her pharmacy ever again. WHAT? I was stunned. I was angry. I was mortified. She was self-righteous and adamant — as if she was on a crusade of some kind. I was in tears, not over the prescription not being properly filled, but at how I was treated. When I got home I googled “pharmacies not filling pain medication prescriptions” and wow did I get educated fast! It didn’t matter that I had cancer in my bones! As far as that Pharmacist was concerned, I was obviously a drug dealer.
I called my doctor and explained, and he advised me to fill my prescriptions at the pharmacy near his offices. This required a drive into a neighboring county, but that’s what I had to do. The additional problem I encountered was that my insurance preferred generic brands in 90-day quantities (4 pills per day x 90 days = 360 pills). There are quantity restrictions for certain classes of drugs, so the most I could fill at one time was around 30 days, if that. I would sit at the pharmacy feeling embarrassed, in pain, and exhausted while they worked it out with the insurance company and still remained in compliance with their rules.
It wasn’t just those pain meds that I was taking though. I had been prescribed a number of medications for my various illnesses. The only pill I had ever taken in my life was ibuprofen, so I was new to the world of pills. I remember sorting them into those plastic pill containers and wondering if the pills would kill me before the illnesses would. I got online and researched every single one of those pills. It took me a long time to do that as I demanded my brain to function through the fog.
I was also taking a cancer drug, as a follow-on to the infusions, and started having an allergic reaction. I think that was the day I said out loud “screw it!” I took the cancer pills and threw the bottles into the back of the top shelf of a closet because: 1. I couldn’t flush them down a toilet, 2. I couldn’t throw them in a regular trash can, 3. Their “street value” was about $12,000/bottle, 4. You’re not allowed to give your drugs to anyone else. One by one, I tossed a bottle of this and a bottle of that into the back of the top shelf of a closet. My intention was to return them all to a “pharmaceutical disposal site”, but gee, that would require me carting them to a pharmacy where I’d probably be arrested somehow for carrying around drugs. LOL. It’s funny now, but it wasn’t funny then. I did eventually dispose of the drugs properly.
I am not advocating anyone to use my method of getting off pain meds. First of all, withdrawals are a serious thing. I think I spent a week or two in bed, safely tucked away with no responsibilities. I knew the mood swings were part of detoxing. I watched a lot of old movies to keep my brain busy. I made sure I drank plenty of water and ate just enough to make it through. I didn’t socialize much because I felt like crap, and wanted to scream at everyone. If you read the literature, they tell you that going “cold turkey” is very dangerous for some people and can cause heart failure and other horrible things – so, don’t do what I did. Do it under the supervision of your doctor. Thankfully, I was able to soldier my way through it alone.
It probably took a good year for my body to fully be free of all those drugs. I say that because the brain and nervous system have some sort of pain vs pain-free memory thing going on. As best as I know how to explain it… there were days where this little voice in my head would say, “Hey, go look in the top of that closet and see if there are any pills left”. I would rebuke Satan, as is my custom, and busy myself with something kind and nurturing!
This is the important part to me and something others need to understand. People who live with chronic and sometimes severe pain need a lot of grace. I can’t walk very far, stand for very long, sit upright for very long, lift anything too heavy, run up and down stairs, hike up a mountain, etc. Mind you, I was a long-distance runner pre-illnesses, so it’s not for lack of wanting. It’s pure disability. I have to keep my feet up for many hours every day to keep the swelling down. I need lots of sleep. Bright lights and loud sounds still disturb my brain and cause me discomfort. I can have very clear-minded days, and days where I panic a bit because I can’t remember what happened the day before, what I did or didn’t do, said or didn’t say. I have daily pain, become exhausted easily, and I can’t do all the things everyone else does.
Embracing my disabilities was a huge step for me because I was embarrassed that I couldn’t do things like everyone else. However, embracing the pain, is the key to moving forward in spite of the disabilities. Accepting the pain, accepting the disabilities, accepting the limitations has freed me to be my new normal and feel confident about it.
In Part 2, I will discuss stocking up on medications and the general concepts around “when there is no doctor”.
To be concluded tomorrow, in Part 2.