New Year & New Explorations

It seems so far away now: I rang in this New Year with bubbles in a glass that fizzed up my nose when I sipped them…

Now that the celebrations are over, I’m slowly – and painfully – settling into another new year. I could approach it with introspection, by summarizing all the things that happened or went unfulfilled for me in 2017, but if you’ve been reading my writing for the past few years you’ll know that my health did not improve and my doctors have yet to find the magic pill to heal me. What I’ll do instead is tell you about the things I’m looking forward to in the coming weeks and many months from now. However, I won’t go into details because, if I do, I won’t have much to write about as the year unfolds.

I’ve decided that 2018 will be a year of learning for me. That’s not to say I haven’t learned anything in past years, especially in the most recent years since the arrival of my illness when researching diagnoses and treatments to better understand all that’s happening to me; and when writing informative – and I hope educational – and coherent posts became necessary. When I started this blog a few years ago, the main goal was to share my experiences as a person with a chronic illness that involves severe chronic pain and to connect with anyone living with similar issues. Although, that scope unexpectedly broadened to include the creative things I do to cope, my illness and pain are still what drive the tales I tell; but I haven’t invested enough time to learn how what’s happening to me physiologically has impacted the body I inhabit or how it all might have started.

To that end, I got some new books over the holidays that should shed some light on things I’ve pushed to the back of my mind as I’ve battled through painful days and disappointing treatments while somewhat passively acknowledging the changes, obvious and subtle, happening within my body. I chose these books because of the whole-body perspective each author reportedly takes when discussing health and healing.

The books in my stack include

  • Gabor Maté, M.D., When the Body Says No: The Cost of Hidden Stress: “provides answers to… important questions about the effect of the mind-body link on illness and health and the role that stress and one’s individual emotional makeup play in an array of common diseases”.
  • Katy Bowman, Diastasis Recti: The Whole Body Solution to Abdominal Weakness and Separation: “Diastasis recti, an unnatural separation of the abdominal muscles, in not just a “weak core.” It’s a symptom of a whole-body problem. Your abdominal muscles have many important jobs – they help you to do everything from twisting your spine to singing, accommodating pregnancy, and protecting your abdominal organs. They should not be splitting down the middle!”
  • Susan Hollister, Heal Yourself: Anti-Inflammatory Diet. The Top 100 Best Recipes for Chronic Inflammation: “Chronic inflammation has become an epidemic. Just look at your friends and family. How many of them have diabetes, heart disease, arthritis, fibromyalgia or chronic pain? These are caused by chronic inflammation. This book will help you manage and prevent chronic inflammation. In the chapters that follow you will find activities, supplements, medications, and other solutions that will help you reverse your inflammation and alleviate its pain. You will discover foods to avoid and you will also learn which foods help to reduce inflammation.”

As I’ve done – and will continue to do – with my treatments and my creative coping practice, I will share what I learn as I progress with the hope that it’s beneficial to others too.

Alas, by my count, there are still a number of things – mainly pain treatments –, which I did not post about last year because of the research required and the great emotional difficulty of processing the outcomes, while trying to write cohesive posts. Once I get around to finishing some editing, I’ll post them because I believe that learning about these treatments may be beneficial to others who struggle with chronic pain, regardless of my personal outcomes.

In the meantime, I’m back on the treatment and procedure(s) treadmill this week; and I’ll hopefully have some new and interesting – as well as successful – treatment information about which I’ll fill up the site. I don’t make New Year’s resolutions, however, I do wish everyone (family, friends, and all those I connect with through this site) the best and hope that this year is already better than last…

 

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Painful Pins and Needles

I haven’t had a lot of luck finding someone who can help me clean my home and do my laundry on a regular basis since becoming ill. The last person I hired was wonderful. Unfortunately, for me, housecleaning was only extra part-time work she did to make ends meet. Fortunately, for her, she was able to find full-time work with enough hours and compensation that meets her financial needs. Her now full-time employment means that she doesn’t have the extra time – and I’m certain not the extra energy – to clean homes anymore.

Since losing her help, I haven’t been able to find someone or a service that will include laundry as part of housecleaning without charging an arm and a leg. So, I’ve returned to doing both tasks on my own when I have the energy and not too much pain, which means things aren’t always as tidy as I like them to be. This past weekend, I had to do laundry because my dirty towels and bed linens were starting to pile up. All the activity and energy I needed to get them clean caused a pain flare up and triggered a symptom I haven’t had for a long while: my feet and ankles are swollen.

The usual warning sign of feeling pins and needles prickling from my toes and up my legs all the way to my hips preceded this pain flare up. Feeling pins and needles always causes an extremely high level of anxiety in me because I know it’s what happens right before the level of my pain starts to climb; and once the pain starts to climb I have no control over how intense or painful or for how long the flare up will last. All I can do is hope that it won’t be so terrible that I’ll have to go to the hospital emergency room for help to cope and get some relief.

On the other hand, I don’t get any warning sign(s) before my feet and ankles swell. It just happens and it adds to the pain in my feet and ankles because they become tender to the touch. I never know how swollen they will become: at times, I’ve been unable to wear certain shoes or boots because my feet seem to grow a size. I never know how long the swelling will last: this is the third day so far and sometimes they’ve stayed swollen for weeks.

Furthermore, after all this time, my Pain Specialists don’t know the reason(s) behind the swelling. At one point, they believed they increased the dose of one specific medication I was taking (Gabapentin/Neurontin) too high. This made sense because one of its known side effects is swelling of the hands/ankles/feet. However, last year, when my Pain Specialist decreased the dose then eventually removed Gabapentin from my treatment the swelling didn’t immediately go away. Some months later, it did stop, and it stayed away since about the middle of last summer. Why it came back a few days ago, I’m not sure.

So, once more my legs feel as if they are on fire as the pain builds and they swell. I’m doing my best to keep my legs elevated because I hope it will help to reduce the swelling – even if it’s only a little bit – and staying off my feet can help me cope with the pain flare up. I’m also sticking closely to my medication schedule by taking them as soon as my alarms go off because I want to maintain a steady level of pain medication(s) in my system.

If things become unbearable, I’ll make my way to the hospital emergency room.

There’s not much more I can do…

 

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?

 

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

 

Migraine Memories

As we transition into spring, I’m hit with an almost joyful thought: I haven’t had a migraine caused by barometric pressure in so long I can’t remember the last one. For a long time, my body had difficulty adjusting to the change between seasons. I dreaded the rainy, darkly cloudy, wet days that were characteristic of spring and autumn weather. I would wake in the mornings without having to open my eyes to know it was overcast outside because I would have piercing pain on one side of my head, usually accompanied by what felt like someone using a very pointy sharp tool to dig through either of my eyes. On days like that, I couldn’t go to work, before that university, before that high school, or participate in any other planned activity. My body required that I stay in bed as motionless as possible with a hand pressed to the side of my head and my face buried in a pillow to prevent any light from getting into my throbbing eye(s).

I would pray for sleep because taking any pain medication at that stage would be pointless. I couldn’t eat until the migraine passed because the smell or even the thought of food made my stomach heave with nausea. I couldn’t have anyone touch me either. The slightest touch from another person would make the already hypersensitive nerve endings all over my body make me want to peel my skin from my body. Looking at light was probably the cruelest thing I could do to myself. Allowing the dimmest level of light to make contact with my pupils felt like a blade of steel was slicing through, not just my eyes, my entire head. All these symptoms made communicating with anyone to describe what I was feeling extremely difficult. Whether it was a blessing or a curse, I’m still not sure, but all the women in the paternal line of my family suffered from migraines, so there was an unspoken acknowledgement when each of us was hit with an episode of this debilitating illness, which made the need for complete silence easier to meet.

I was also fortunate, during the early part of my work career, to have a manager who suffered from migraines too. There were days when he looked at me as we passed each other in the office hallways that he could immediately recognize that I was in pain. He would tell me to finish whatever I was doing, if I could, then go home to get rest. If I didn’t make it to work for the next day, or two, he was empathetic enough not to have calls made to my home because he knew what a ringing telephone could do to a person with a migraine. Without that support, I don’t believe I could have thrived and achieved the successes I did so early in my career in a corporate setting. Unfortunately, in later years I experienced less accommodating workplaces; and from conversations over the years with other migraineurs and from reading so many people’s stories about coping with migraines while working, I know how stressful being in an environment where people think a migraine is just a strong headache can be.

I’d like to believe that taking multiple ‘mindfulness-based meditation for stress and pain reduction’ courses is what got rid of my migraines. However, I still had some for years after taking those classes, although not with the same level of intensity, and I was able to cope with the symptoms better too, which felt like a miracle. Nowadays, I keep my fingers crossed that migraines won’t become a regular part of my life again. Living with the chronic pain condition I have would be impossible if I also had to cope with the crippling effects of migraines, especially when I can remember having some that lasted for days on end. Luckily, on this gloomy overcast day, I can look at the bright glare from the screen of my laptop and write about my experiences, instead of hiding in bed under the covers.

 

Blinded by the Light ~ Manfred Mann’s Earth Band

 

Pain Clinic #10: The Hope of Bluebells

I had to be up and out of the house early in the morning for an appointment at the hospital yesterday. I had to check in to the Day Surgery Department at the hospital where I am seen by my Pain Specialists by 7:45 AM so they could prep me for yet another pain treatment. I haven’t been writing about my Pain Clinic visits much in past months because they are so frequent and usually consist of just a check in to see how I’m coping and what might be the next course of action. I’ve also been doing research about the procedures and medications they propose so I can better advocate for myself and not allow anxiety, due to lack of knowledge or understanding of what is being done to my body, to potentially create a mental block or resistance so my body can fully benefit from what I’m undergoing.

Yesterday’s pain treatment was particularly tough to handle mentally. However, on my way home from the hospital afterwards, I saw bluebells in a flowerbox outside a restaurant. I took some photos of them because, to me, they have always symbolized the beginning of Spring and the resurgence of life after the deepest cold of winter. It made me so happy when I saw them. I’m hoping they are a sign that what I went through yesterday in the treatment clinic, is the start of something better in my life…

 

 

Prepared to Pluck Polyps

After some juggling of schedules, I’m finally having surgery today because last Spring the results from my follow-up abdominal ultrasound scan showed that I have a uterine/endometrial polyp. My Gynecologist decided it was best to remove it, and not leave it alone and subject me to abdominal scans every six months to monitor it for changes. If I had demanded he leave it alone – say because I feared extreme post-surgery pain – any changes that showed up in later scans could have signalled cancer. Even the slimmest chance of that happening was enough for me to accept my Gynecologist’s decision.

To be honest, I expected to have the surgery in the fall, but I had to place a priority on the treatments and programs I already had scheduled for my chronic pain during those months. My continued pain was also a big part of the focus for my surgery pre-admission appointment last week. I spent about four hours in the hospital’s Pre-Admission Center on Friday, meeting with nurses, technicians, and doctors to discuss my medical history and identify any current health issues, have blood drawn for tests, and get a general physical. The nurse was the first person I met with and at one point, while looking through my electronic medical files; she rightly stated that I spend too much time in hospitals.

During my meeting with the nurse, I had to recount the history of my illness, the outcome of my last surgery and recent treatments, and the long list of medications I now take to cope with my pain. As pleasant as she was, while I sat there and went through all those details, the interaction put a sharper edge on the pain I was feeling. At one point, she noticed my creased forehead and asked if I was all right. There wasn’t much I could say in response, except that it was just my usual pain, which thankfully she couldn’t tell was a lie. Before I moved on to the next stop in the pre-admission process, she gave me some literature on my surgery, a Hysteroscopy, and although I’ll be under general anesthesia, will not require any abdominal incision(s) because it will take place entirely within my uterus. Oh, joy!

Next, I met with the blood technician who took three or four vials of blood. I’m rarely sure about how many vials get filled for blood tests because having my veins pierced by the needle always hurts like hell and I never look. I am concerned about what the results from the blood tests might be because recent tests have uncovered that I have low iron – which means I’m anemic – and I have low blood (hemoglobin) levels. If I have below normal blood levels again, my surgery might be rescheduled until I get a boost. Thankfully, when I later met with the doctor for my physical, the session was short and didn’t cause me any extra pain.

My last stop, in the pre-admission process was with and Anesthesiologist, who is a member of the hospital’s Pain Team. I had to meet with someone from the Pain Team to discuss the possible outcomes of the surgery with respect to my pain. The type of surgery I’m having is usually a Day/Ambulatory Surgery procedure, meaning that you get to go home once you wake up and don’t show any adverse reactions to the anesthetics. In my case, the chronic pain I live with daily is factored into when I might be allowed to go home. If, when I wake up, I don’t have unmanageable pain I can go home on the same day. However, if my pain can’t be controlled I’ll be kept, at least overnight, until my pain reaches a level I can cope with at home. I’m hoping for the former because I want to come home and sleep in my bed after it’s all over, but knowing what I do now about my pain’s unpredictability I have to prepare for anything.

This is what I was listening to as I posted this morning…

The Beatles – Hey Jude