The Pill Box

Every week, either late Saturday night or at early light Sunday morning, I go through the ritual of filling my pillbox with my medications. My pillbox has 28 compartments. Each gets filled with a varying number of medications in the form of pills or capsules. On average, I take a combination of about 32 pills and capsules each day. However, the 32 pills and capsules don’t account for all the medications I take daily because I have others that come in different forms i.e. liquids, inhalers, and – on the odd occasion when my gastrointestinal system protests against ingesting certain types of oral pharmaceuticals – suppositories. Early on in my illness, I was even prescribed a topical anesthetic for pain that came in patch-form, but it did little to reach the source of the pain deep in my pelvis.

The largest part of the pills and capsules that fill each pillbox compartment are medications I take to manage my pain. They aren’t all opioids/narcotics, but the majority of what’s in the compartments usually is. Unfortunately, not all these medications always do what they are prescribed to do. Therefore, over the last four years there have been many changes made to my medications. Changes in doses are usually an increase in strengths – as petite as I am I seem to need large doses to manage my pain –, but I’ve learned that dose increases doesn’t have to mean an increase in quantity. Some medications have also been swapped for others of equal strength when they have caused unexpected side effects or delivered no benefit at all after weeks and in some cases, months of hoping for some relief with them; and occasionally new medications get added to the mix in an effort to boost the benefits of what works.

The Pill Box – 1

The Pill Box – 2

Sometimes, the number of pills and capsules I take might fluctuate from day-to-day. That fluctuation depends on whether my doctor(s) writes prescriptions for medications with a minimum and maximum dose. Because my pain medications are largely opioids/narcotics, I try – not always successfully – to take the lower end of a prescribed dose when possible to manage my pain. My Pain Specialist prescribes my primary pain medication in two forms. The first is a long-acting opioid/narcotic prescribed to be taken multiple times each day that is intended to manage my pain for a scheduled period. The second is a breakthrough or ‘rescue’ dose of that same opioid/narcotic that I take in between the long-acting doses; especially in times when my pain levels are high, which is most of the time. I try to take that breakthrough medication on the lower end of the prescribed dose(s), when I’m having a good day, which is rare; or if I’m lucky enough to sleep through the night the overnight breakthrough dose gets skipped.

The main point of having a pillbox is to make sure I don’t miss scheduled medication doses because I take so many throughout the day. Unbelievably, I’m not always successful and might miss a dose of something from time to time, whether it’s because I get distracted or I’m fortunate enough to get some restful sleep. Nonetheless, the brightly coloured compartments of the pillbox that I fill with brightly coloured pills and capsules is my constant companion and may remain so as long as I need a reminder to take 32 pills and capsules – give or take a few – each day.

If you don’t have a pillbox, how do you remember to take your daily doses of multiple medications?

 

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Sleep: The Unconscious Way to Cope With Pain

Have you ever had such intense pain, physical, or other, that all you could do to cope with it is sleep?

I’ve slept for the better part of the last 2 days. I had to attend a family event on Sunday afternoon. When I say “had to” I don’t mean forced to, I mean I would have felt horrible – worse than the pain I’ve had since – if I hadn’t attended because it was in honour of one of my favourite aunts who does whatever she can for everyone. However, between the drive to the home of my uncle who hosted, moving around to interact with all the family members and family friends; and then the drive home, my body had to go into near shutdown so I could cope with the resulting pain flare up.

By the time I arrived home around 11:00 PM on Sunday night, I knew I was in for a rough few days; not to mention my experience dictates that it takes at the very least two days for me to recover after going out to do anything. Upon arriving at my uncle’s house in the afternoon, my pain level was already climbing; and on the drive home, the soreness in my legs had already become unbearably intense. When my feet touched the ground as I got out of the car, it was definite that I would not escape the punishment for daring to enjoy life just a little bit while celebrating the life of someone I love. After shutting the door to my home behind me, I made a beeline for my bedroom to change into cozy pajamas then I went into the bathroom to perform the nightly rituals of brushing my teeth and putting my hair up so I don’t wake up with an equally painful tangled mess of hair to deal with.

I was in bed by midnight. It took some time to fall asleep because I was so uncomfortable with the pain building throughout my body. I vaguely remember waking a few times during the night, but I know I was too exhausted to awaken fully to take my overnight breakthrough dose of pain medications. I even slept late and missed taking my first large dose of pain medications on time at 6:00 AM. However, being late this one morning didn’t matter much because being asleep kept me unaware of the pain. The rest of Monday was spent in a groggy haze of pain medications and sleep, but I didn’t miss much because it poured rain most of the day and the grey sky outside was not at all appealing.

I woke up around 4:00 PM because my phone rang. It was my therapist calling me. I called him on Saturday shortly after coming out of my panic attack so he was responding to my message. I knew he wasn’t in the office during the weekend, but I felt that I had to talk to him as soon as it was possible to sort through why the panic attack might have happened. As usual, he helped me sort through the still lingering feelings and to realize how everything I’m coping with – including the current pain flare up – and all that I’ve lived through in my life are so deeply connected, it makes a panic attack a reasonable thing for me – or anyone dealing with so much – to experience. He also gave me some practical tips on how to cope if I have another episode: splash my face with cold water, put cold water/a wet cloth on the back of my neck, breathe into a paper bag, lay on the floor so I feel grounded, and connect visually with objects around me so I can know what’s real. I was grateful for that conversation and the clarity it brought.

I stayed awake for a few hours after that conversation. My friend R called for one of our weekly chats. Then I tried to make sense of the horrible news of the day and deciding what my stomach could tolerate so I could make a meal. I failed at both and fell back to sleep on my couch. I managed to wake up a few hours later to take my last large dose of pain medications and I might have stayed awake for about an hour or two. The next thing I became aware of was that for a second morning in a row my body opted to sleep as late as it could handle before waking to take my morning dose of pain and other medications. After doing that, I still had the need for two morning naps.

I also realize, sometimes I have to accept that it’s not always conscious methods that are best for coping with my pain.

 

The Beatles – Golden Slumbers/Carry That Weight/The End

 

Futile Emergency Room Resistance

For the first time since having surgery last August, I landed in the hospital emergency room on Sunday. I was struggling with a pain flare up all day and finally had to surrender to the fact that my pain medications were not doing all they could for me in the pain management department. After trying to be still, crying, talking myself into a space of calm, and trying desperately – but failing miserably – to sleep through the pain, I gave in. When you’re barely moving and still have intense pain in your feet, ankles, thighs, hips, pelvis; and lower back pain that feels like it has tentacles spreading up your back, it’s hard to keep assuring yourself for hours on end that the increasing waves of pain will pass. On Sunday, there was no ebb to the painful tension enveloping my body, so the dreaded emergency room became my last resort.

Before making the decision to go I contacted some of my friends who usually make themselves available to keep me company while I sit through the hours of IV medications slowly dripping into my veins. Unfortunately, on Sunday afternoon, as one would expect, most of them were locked into plans. The ER is uncomfortable enough, but having to face going in on my own always makes it worse. It’s also partly why I held off from going in for so long. Later in the afternoon when I could bear it no longer, I accepted the offer of a neighbour who had come by to drop off some items from the farmers’ market to go with me and keep me company until someone closer to me could come be with me. I’m certain I would have waited hours longer before going if he hadn’t stopped by.

Emergency rooms, especially on a weekend, tend to be populated with interesting characters. When we arrived at my local ER on Sunday, there were people from all walks of life waiting for triage to the right level of care. One woman suffering from obvious mental health issues was shouting incoherently at the top of her lungs what must have been a badly patched together montage of events from what sounded like a tragic life. As she became more animated and the flow of expletives in her ranting increased, the hospital security guards and police were called to subdue her. When I finally made it into the ER treatment area I could still hear her shouting from a distant corner, and I overheard the nursing staff assuring security they could leave because she was securely restrained. It hurt my heart to picture that woman strapped to a hospital bed against her will.

Thankfully, I didn’t need that kind of intervention. However, once the nurse recorded my vitals I knew that my body was in crisis. My blood pressure was 162/82. That’s not the highest it has ever been but it was high enough to confirm for the nurse completing my intake, that my pain was real and I wasn’t in the ER seeking drugs when I said my pain was an 11 or 12 on the pain scale. After a 90-minute wait, I was finally seen by a doctor who had me list the cocktail of pain medications I take daily so she could understand what I was coping with and what she might be able to do to help me. I could tell from how little she said that she was trying to wrap her head around someone with a body as small as mine taking such high doses of pain medications yet still feeling so much pain. I tried to get her mind moving by telling her what treatment(s) I had received in the ER for past pain flair ups, and that seemed to jumpstart things.

My friend J arrived a short while before my discussion with the doctor started. It was good to have her there because she has been through this scenario with me many times before and is sometimes faster at responding to questions about my condition than I am when I’m in that state. J’s arrival also gave my very kind neighbour a chance to slip away and head home. He had sat with me for a few hours then hung around chatting with J and me, for longer than he needed to, to make sure I got some treatment before he went home. His presence reminded me how blessed I am to have so many people in my life who care about me, even when they have no vested interest to do so.

After consulting with the ER Attending Physician on shift, the doctor returned and told me they were going to start by giving me a shot of my old faithful injectable Toradol, and that I should take the scheduled dose of my pain medications, which at this point were about 90 minutes overdue. Unfortunately, I wasn’t paying close enough attention when she said I would receive an intramuscular shot of Toradol instead of an IV drip. For anyone who’s never had a needle plunged into a muscle, unless you have masochistic tendencies, give it a pass. The pain in my arm after that shot rivaled what I was already feeling in the rest of my body. The nurse instructed me to rotate my arm to get the medication flowing through me. I flapped my arm around like a bird with a broken wing for about ten minutes. For all the good that it did because my pain was unaffected.

When the doctor returned to check on my progress, my blood pressure reading had dropped to 160/82. For the first time, the Toradol wasn’t working. She went off to get more advice. What she tried next was an IV with an added milligram of Dilaudid, which is part of my regular pain medication regimen, and Lidocaine. Lidocaine is a local anesthetic that prevents pain by blocking the signals to nerve endings in your skin. It’s usually used to numb skin before painful procedures: think about the shot to your gums before your dentist starts drilling. Within 30 minutes, after the drip was opened, I started to feel some relief, and the sure sign that things were moving in the right direction was my blood pressure began to fall.

With this positive result unfolding the Attending Physician came by my bed to talk to me. He was empathetic with my situation and concerned that I am living with this extreme pain. He wanted to know what treatment(s) aside from pain medications I have received and added a few suggestions for future treatment(s) to my list. He also made it clear that if the effects of the medications I received wore off I shouldn’t hesitate to return to the ER; and that if I did I should tell whoever treated me to try the Lidocaine, as unusual as it may sound. He even asked if I wanted to have an extra top-up of Dilaudid to make sure the positive effects I felt didn’t wear off too soon. However, because I still had a dose of Dilaudid left in my pillbox for the night, I opted instead for another dose of the Toradol.

Once the IV drip stopped and I got dressed, I became acutely aware of how hungry I was. The night’s ER adventure ended at 2:00 AM with J taking me to a nearby 24-hour diner to get a huge Chicken Parmesan sandwich with French fries, and a slice of cream cheese icing-covered carrot cake to go. More importantly, although I had resisted going, my visit to the ER gifted me with the knowledge of an alternative cocktail of medications to bring my pain back to a level where I can cope if I need extra support again in the future.

 

Chumbawamba – Tubthumping

 

Opioid Induced Constipation & The Undignified Big Pharma Response

Last Sunday, like millions of other people, I watched Superbowl 50. As usual, there were some great commercials throughout the game. However, I can’t forget one commercial from the 2nd quarter. Not because it was funny and creative like most of them were, but because of the targeted medical condition: opioid induced constipation (OIC). The reason I can’t forget it was how embarrassed I felt as my friend with whom I watched the game laughed at the inappropriate humour the pharmaceutical company used to promote its product. For those of you who don’t suffer from chronic pain or have never had the need to take opioid (narcotic) pain medications for pain relief, I assure you this condition is a real thing. The Australian Pain Society states, One of the most common adverse effects of chronic opioid therapy is constipation. Up to 95% of patients prescribed an opioid report constipation as a side effect, which can occur soon after taking the first dose.”

Opioid induced constipation is also known as opiate bowel dysfunction (OBD); and according to the American College of Gastroenterology “constipation may be debilitating among those who require chronic analgesia [pain relief]. OIC/OBD affected an average of 41% of patients taking an oral opioid for up to 8 weeks.”   The reason for this is that “opioids cause constipation by binding to specific receptors in the gastrointestinal tract and central nervous system, resulting in reduced bowel motility through direct and indirect (anticholinergic) mechanisms.”  In short, the opioid pain medications delay or block messages throughout the body that tell you when you need to empty your bowels.

I understand that a commercial’s purpose is to grab its audience’s attention in a short time. However, the tone of this commercial failed to convey the seriousness of this condition, while using lowbrow humour to flog the product. Practical Pain Management, a publication founded and written by pain experts, notes that although opioids have been in use for centuries; it’s only in recent decades that this kind of medication has received any significant attention and investigation. Sadly, we are only beginning to understand and identify the many side effects of opioids. Constipation, nausea, emesis, pruritus, respiratory depression, and somnolence are well known. However, not so well known are effects on immune function, urinary retention, endocrinopathies, gastroesophageal reflux (GERD), gastroparesis, sleep apnea, cardiovascular system, osteoporosis, emotions, dentition, and renal function.”

This lack of knowledge about opioids begs the question, how many people know that if a patient that has OIC/OBD does not receive the proper medical treatment it “may cause rectal pain and bleeding, abdominal pain and distension, urinary incontinence, faecal impaction, rectal tearing, and, in very severe cases, bowel obstruction and colonic perforation?”  How aware are people that OIC/OBD can reduce a person’s quality of life as much as the chronic pain doctors prescribe the opioid medications to treat? The Australian Pain Society also notes that, Some patients would rather endure chronic pain than suffer from the severe constipation that can arise with long-term opioid therapy. One study found that approximately one-third of patients missed, decreased or stopped using opioids in order to make it easier to have a bowel motion; the majority (86%) of these patients experienced increased pain as a result, which reduced their quality of life. Reducing the opioid dose is not considered useful, as analgesia [pain relief] may be compromised and constipation may not resolve.”

I know that 30 seconds isn’t a long time and not all the points I raise most likely could have been touched on in that amount of time. However, I do know that the pharmaceutical company could have approached this issue in a more dignified way. When the commercial ended – and my friend’s laughter died down –, I did educate him about the seriousness of OIC/OBD, and how I’m affected by this condition because of the large doses of opioid pain medications I have to take to manage my pain. I hope that others who might have been in the same situation during the game were able to have similar conversations. If not, here’s a link to a therapeutic brief from an Australian Pain Society study that gives information about OIC in plain language in a downloadable PDF file: Opioid-induced constipation– a preventable problem

 

Bob Dylan – Dignity

Constant Exhaustion and Missing Meds

Lately, I’ve been constantly exhausted. A part of it is my messed up sleep schedule. The other part of it is my pain medication level. However, this constant exhaustion is causing a problem: I’m missing some of my pain medication alarms or falling back asleep before I take a dose of my medications – as I did this afternoon.

Missing some of my scheduled medication times is causing my pain levels to fluctuate, and my goal to taper my pain medications to a lower dose is not going very smoothly. I know that I only had surgery a month ago and my body is still healing, but this constant exhaustion is making it hard for me to develop a normal routine and it’s frustrating me.

I’m wondering if anyone has any suggestions about how I can cope with this.

 

Nerve (Almost) Block Effects

On Tuesday morning I had a nerve block. According to the pain specialist who performed it, the procedure couldn’t have been more perfect. The needle was easily passed through my tailbone to deliver the anesthetics to my nerves – this may be the one thing about my condition that has played out as described in a medical textbook. Because they inserted the needle into my tailbone, the area has been incredibly sore so the only way I’ve been able to sit is straight upright as if I have a plank in my back.

Ganglion impar block

Ganglion Impar Block

For the past 48 hours, I’ve been dutifully keeping a log of my pain improvement progress every two hours. Overall, I’m not pain free but I have less pain than before the procedure. I still have my right-side oriented pain in my lower abdomen, back and leg but I’m experiencing what I’ll characterize as a constant low level of pain on the pain scale. This probably means that combined with the nerve block, I’m feeling the benefits of my pain medications for the first time in a long time. My hope is to lower the level of pain medications I take over the next few months so when I have surgery the doctors will have room to treat me before reaching the maximum limits of pain medication doses during my recovery. The pain specialists have told me that my case is very complicated and the possibility exists that my pain will be difficult to treat post-surgery. This nerve block will be a good indicator of what they can expect.

I’m also hoping to go for a few walks before the effects of the nerve block wear off. Walking for a significant distance is something that I have a lot of difficulty with these days. With the weather being as wonderful as it is, it would be nice to pack a lunch, walk to the park, and sit in the sun for a while. That’s such a simple thing to wish for, but it’s something I badly want to do. However, I know I’ll have to take things slow because I just came back from an appointment and the car drive there and back has affected me negatively and increased my pain. I’ll dream about the walk to the park while I rest my body.

John Mellencamp – Hurts So Good

Drug Seeking Friends Don’t Care About Your Pain

“I just want to see what kind of high they give me,” he said.

Every so often these words pop into my mind. They are a painful reminder that someone I considered a close friend cared so little for my well-being he was willing to take from me the only things managing my pain and keeping me out of the hospital emergency room. He wanted me to give him the tiny, pale, green, opioid pills prescribed by my doctor in meticulously measured quantities to cover two weeks of pain-filled days. He justified his request by saying, “Your doctor will write you a prescription for more pills.”

How did we arrive at “I just want to see what kind of high they give me”? About six months into my illness this friend started to express a lot of interest in what kind of pain medications I was taking and how much of them I needed to take to get some pain relief. I saw it as genuine concern because we had been friends for about a decade and my pain medications just became a natural part of the conversation when he touched base to see how I was doing. We talked about the various pain medications I had been prescribed and I remember during one phone call he googled a comparative pharmacology chart to see the differences between these pain medications. He expressed a particular interest when he learned that the Dilaudid I now take is “3 to 4 times stronger than Morphine”.

About a week or so later he told me he would be in my area of the city for a meeting one day soon and offered to come by to have lunch with me. He said he missed hanging out with me and it would be good to see me for a few hours. The idea of his visit made me happy. He came to my apartment with some delicious Indian food. I didn’t have the appetite to eat very much, but I was so happy for company in the middle of the day it didn’t matter. As it always was, our conversation was punctuated with laughter and sarcastic barbs. He sat with me for a long while and asked questions about how I was coping, why it was taking my doctors so long to figure out exactly what was wrong with me, and when I might get better. Then it was soon time for him to head back to work.

As we walked toward my front hallway he stopped in front of my kitchen doorway and asked if he could see my medications – all my meds were in plain view on top of the fridge. Being more than a little bit spaced-out and very naïve I didn’t think there was any reason for concern. I showed him the various bottles and explained the contents of each. He noted that the Dilaudid pills were very small considering their strength. As I was putting the bottles back on top of the fridge he asked if he could have some Dilaudid. I laughed because I thought he was joking. He asked again and I realized he was serious. I told him I couldn’t give him any for a number of reasons: they were prescribed for me; they are narcotics; they are a controlled substance and it’s illegal to share them; I needed all of them to manage my pain; and if I ran out of them I would end up in the emergency room because of the pain. That’s when he said, “Your doctor will write you a prescription for more pills.”

This disregard for what would happen to me if I ran out of pain medication stunned me. He kept asking and trying to persuade me until I felt uncomfortable and all I wanted was for him to leave; so I gave him one pill. He wasn’t satisfied with just one. He said one wasn’t enough to see what kind of high he would get from them and whether it would be worth having his “guy” go to the trouble to get some for him. I felt instant nausea. He wanted me to give him pills I was depending on to cope with debilitating pain for his recreational use. I held firm and told him even one was too much for me to spare. He finally stopped asking. He was clearly disappointed. He walked to the front door. Put on his shoes. Gave me a hug and left. I’m not sure how long I leaned against the door feeling numb because my anger couldn’t break through the muddiness of pain and medication.

I will never be able to forget this happened.

He wanted my pain medication to get himself high.

He also confirmed what I suspected for a long time. He is an addict.

He labels himself a “recreational drug user”, but there was no fun in what he did to me that day. He has often said that he ingests substances – cocaine, mushrooms, MDMA, Oxycodone, marijuana, alcohol, caffeine tablets, and energy drinks – to enhance and heighten his experience of life. From what I have witnessed it’s more likely he’s trying to escape parts of his life.

He didn’t care about what would happen to me if I didn’t have enough pain medication. But I knew: if I ran out of pills early I would have to call my pharmacist to get a refill; my pharmacist would look at my file and see that it was too soon; he’d tell me he could not be refill them yet because they are narcotics and Controlled/Monitored Drugs and question why I had taken that quantity so quickly. Then because of strict regulatory policies the pharmacist would not contact my doctor’s office on my behalf to get authorization for a refill, but he would advise me to contact my doctor immediately to be assessed.

My doctor would hear alarm bells when I told her I was out of Dilaudid before the end of the two-week period. She would assume I had taken them all and she would be concerned that my pain was becoming more severe, or worse, that I was abusing my pain medication. She would bombard me with a million questions and I would most likely lie to shield my friend, to hide the crime I had committed – giving someone even one of your narcotic pain pills is breaking the law – and to get replacement pain medication so I wouldn’t land in the hospital. From that point forward she would monitor me even more closely and probably request that I pee in a cup more often to check the level of Dilaudid – and other possible substances – in my system. And I would have degraded my doctor’s trust.

Thankfully these things didn’t happen. But his actions and words caused me to feel so stressed and paranoid I started hiding my pain medications in dresser drawers in my bedroom. I also distanced myself from him because he made me feel unsafe and I didn’t want him to believe what he did to me was ok. I haven’t seen him since that day over a year ago. And I can no longer consider someone who would put me at risk my friend. Nonetheless, my hope for him is that one day he recognizes the harm his addictions create and then engages in the work needed to repair and balance his life, family, and his relationships.

 

P!nk – Sober