Grounding Lines

I needed to release a lot of negative emotional energy today. All the terrible violent and racist activity that’s been going on in America since last Friday has put me on edge. In the past, I might have gone for a long run but running is not an option for me because of my illness and unceasing chronic pain. Instead I opened my sketchbook and started drawing lines. I drew lines until my mind started to clear. I kept drawing them until I felt grounded again.

If I’m being honest, I’ve been on edge for quite some time. It’s hard hearing someone, like the President of America, who holds such significant power, saying things that are divisive and so far from disavowing groups rooted in hate and racism. As all of this persists, I have to believe the people who don’t hold his opinions outnumber him. I also have to believe, people whose values are built on the basic premise that all human beings are equal will prevail.

 

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?

 

Horrible Boss Flashback

It never goes away, does it? The involuntary visceral constriction when someone reminds you of a terrible episode in your life. Did the person with whom you imagined yourself building a life break your heart or did you break theirs? Did someone you loved dearly suddenly permanently pass from your life? Did a trusted friend unforgivably betray you? Did you have employers who inappropriately inserted themselves into your personal life? I’ve experienced these situations, and more, that have sometimes made life more difficult than one wishes it to be. However, the incident of which I was recently reminded was the inappropriate treading into my life, which my last employer felt they had the right to do.

I ran into someone recently, whom I had the pleasure of working with on a project for a short time, not long before I became ill almost four years ago. Lucky for her, she did not have to bear the same degree of pain, humiliation, and strife I did to cut ties with our former horrible boss. Hearing the name of the company where we used to work made me cringe. Since the end the legal action I had to take against the company, I’ve done all I can to limit contact with anyone who worked there so I can maintain my peace of mind. Especially those former colleagues who blindly supported my former horrible boss without knowing the truth about what I was subjected to.

My former horrible boss tried to deny me access to my disability benefits when it became clear that I couldn’t return to work after my hospitalization at the onset of my illness. She demanded answers to embarrassingly inappropriate questions about my health. She later terminated the part of my extended health benefits that paid for the many expensive medications I take to function daily; and even worse, she terminated my employment without notifying me about a year into my illness in an attempt to strip me of my long-term disability benefits. On top of all that, she launched a campaign of misinformation within the company to explain my sudden then extended absence. The stress of trying to cope with all of this and my poor health and constant pain was, at times, too much to bear.

The person I ran into knew the crux of the situation because she had heard details from a mutual friend. She expressed her sympathies that someone, anyone, could have done any of what our former horrible boss did to me; especially because the early period of my illness was when my doctors had no conclusive answers about what was happening to my body and I was truly fearful for my life. Instead of being able to direct my focus on my health alone, I was forced to cope with the added stress of an employer who felt they could insert themselves into the most intimate parts of my life. When I refused to share what was happening to me, in part because I truly didn’t know, but mainly because it’s against the law for an employer to ask. It set in motion the series of events I listed above – and much more I try never to think of – that I still sometimes can’t believe. The right to protect my health and personal information caused a protracted legal case that thankfully vindicated me and ended my former horrible boss’s persistently violent prying into my life.

Even though all of that happened, the best thing about this flashback, about any flashback, is that it’s no longer part of one’s current reality. It may be difficult to be transported back to a particular moment when something devastating happened, however, that living moment is gone. Better still, I know I have the protection of the law and the emotional and psychological tools to bolster me if ever the smallest thoughts of that situation resurface in my life, and if any do, I don’t have to stay with them or delve beyond the surface of those memories unless I choose to do so. In this case, where anything involving my former horrible boss is concerned, I choose not to delve deeper than necessary to describe how she attempted to intimidate and deprive me of what I needed to care for myself. I choose not to allow who she was, and probably still is, affect me beyond a momentary tremor in my subconscious because I survived and beat her attempts to harm me during a time when I had to dig deep just to keep living.

 

The Difficulty Of Being Loved

FACT: When we are loved, it’s not always easy to accept it and take in the full meaning of it.

The difficulty of it lies in trusting the realness of receiving something immeasurable without any expectation of having to give a single thing in return. It’s especially difficult when we have lived lives where we survived abuses and/or significant traumas where love and tenderness were withheld to increase suffering. How can a person trust a reality where things are given without a price or obligation attached, when one’s whole existence screams that it isn’t possible to have that, to be worthy of that, or deserving of another human being who regards your being with tenderness and care?

I’m a witness to this struggle now. I’m seeing this unfold in the life of one of my friends and the mental health toll is enormous. My friend’s partner is in the midst of a major health battle and seems incapable of accepting, or acknowledging, how deeply they are loved and cared for by so many people. This person could be told every hour on the hour that they are loved and they still might never believe it. The exhaustive effort invested in repeated attempts to show love in tangible ways with the gifting of things, through deliberate actions, physical emotional comforts, and just being there are all dismissed as insufficient or outright meaningless; which makes the giver, in return, feel unloved.

Being on the receiving end of this dismissal may be a deeper pain than never being loved. Watching someone I love live through something like this makes me feel helpless. There isn’t enough I can do or say to make this situation better. I can be supportive. I can tell my friend kind words or make suggestions about how to cope. However, I know my actions and words only salve the pain during the moments when we interact. When those moments end, my friend is the one who returns to living this difficult reality. A reality that – if I’m reading things correctly – is not going to end well, no matter how much I hope for an alternate result.

As this situation unfolds, it’s getting harder for me to understand why people make living the lives we have so much harder than they must be. Why do we treat each other so harshly? And why, when we are most in need of it, do we reject the kindness and love of those closest to us?

 

Bonnie Raitt – I Can’t Make You Love Me

 

Almost Like Old Times

I had leftover pizza for lunch today. Leftover pizza can be a nice thing. And when it’s leftover from a spontaneous late evening dinner on my patio with one of my oldest and dearest friends, it’s even better.

Yesterday my friend M, who I’ve known forever, sent me a text message at the end of his work day to see what I was up to for the evening. As I wrote then, my mood was quite low on top of my pain level being quite high, but instead of telling him that I asked what he had in mind. He asked if I was up for a visit or if I wanted to go out to get a bite to eat. I didn’t want to do either, but I wrote back asking what his preference was and reminded him that we could get some food and eat on my patio. He thought that was a perfect idea and called me so we could decide what to eat. We quickly decided on a pizza with hot wings on the side, which I ordered while he drove to my place.

Within an hour, we were sitting in the dim evening light on my patio eating pizza and laughing almost like old times. Except that in the past, after receiving his text message or call, I would have thrown on some clothes, he’d come by to pick me up, and then we would drive until we decided what was good to eat in whichever direction the car was heading. I miss those days a lot. Life’s spontaneity is no longer something to which I can surrender. Every moment of my life that requires a large output of energy requires planning. I have to map how long it takes to get ready, whether someone will pick me up or I’ll schedule a ride (a taxi or Über), how long I’ll be able to stand if seats aren’t available, whether available seats are comfortable enough to sit in for the duration of the event, and how long I may need for recovery when it’s all over.

Nonetheless, my friends do their best to understand. Even though they know I might have to cancel at the last-minute, they try to do all they can to make my life feel normal. The latest accommodation they are willing to make is bringing the fun to my home, which thankfully is what happened last night. As blue as I felt yesterday about living through another summer trapped indoors by pain; my friend M lifted much of that mood. Him touching base with me at the end of the day to see what I was up to doing, as he often did in the past, brought me back to feeling what things used to be like for a few short hours, before my pain forced its way back to center stage.

 

Kind Of Blue First Day Of Summer

I know I should be happy because it’s the first day of summer. Above all else, this means we’ve reached the definitive part of the year when the days are longer and it’s okay to wear shoes without socks. Not wearing socks may be my hands-down favourite thing about summer; closely followed by the earthy smell in the air when it starts to rain. But I’m not sensing the uplifting summer feeling today. It might be because I see before me another year when my summer will be spent mainly indoors as I struggle from day to day with pain that unlike the seasons seems endless.

Instead of thinking about the longer, sunny days ahead, I’m feeling rather blue…

I can only hope that tomorrow the sun will shine brighter and that light will lift my mood. While holding on to that hope I’ll have Miles keep me company.

 

Miles Davis – Kind of Blue – 1959 (Complete Album)

 

Good News After A Flawed Rush

Remember that rambling tale I wrote yesterday about what happens when you rush? Well, it turns out all was not for naught after the convoluted list of mishaps I went through to get to my non-appointment appointment. My Endocrinologist, who graciously saw me even though I arrived for my appointment five days early after her office hours had ended; called me first thing this morning to let me know that my blood test results were better than good – I guess that means they’re great (?)!

Nonetheless, there is a backstory on the blood tests and a reason for having an Endocrinologist. It’s because about eight years ago I was diagnosed with Graves’ Disease, which is an immune system disorder that causes an overproduction of thyroid hormones (hyperthyroidism). If you want to learn more about it, clicking on the above highlighted words ‘Graves’ Disease’ will lead you to the Mayo Clinic’s overview. However, what I’m about to tell you isn’t pretty because I probably had the worst convergence of symptoms imaginable and it took quite some time and lots of tests to figure out exactly why my body was working against me.

The least concerning of the symptoms was excessive perspiration, which is as gross as it sounds. It made me feel conspicuous whenever I had to wear heavy jackets, multiple layers of warm clothing, or the temperature in a room or outdoors went above 20 degrees Celsius because I was guaranteed to have rivers running down my back or pools collecting under my armpits, but I could deal with it by changing clothes or taking a shower. I developed an intolerance to extreme heat that still makes it difficult for me to enjoy weather warmer than 25 degrees Celsius, so air conditioning has become a good friend of mine. Then there was the shortness of breath for no reason at all including just lying on my couch. It made me wonder how it had ever been possible for me to be a long-distance runner; and of course, the heart palpitations that started happening at random intervals didn’t help to put that question to rest. They scared the crap out of me each time I experienced the rapid fluttering in my chest.

I also lost a lot of weight. When a person of my physical build loses more than ten pounds it’s noticeable in the way your clothes fit, or stop fitting, and you start to look emaciated. The people in my life noticed it before I did because they could see the changes in my face, which is naturally angular; as it became leaner each time they saw me. I noticed it when the clothes I had altered after purchasing them to fit me properly, started to sag on my disappearing waist and other places. That weight loss caused incredible fatigue, but between my irritability, anxiety, and disrupted sleep patterns, I didn’t get much rest. The weight loss was accompanied by hair loss. I started to shed so much when I combed my hair it looked as though I might be related to some species of longhaired cat – strangely, I have such an abundance of thick hair on my head that the only place the loss was noticed was on the floor or in my brush. Finally, my skin began doing strange things and all those symptoms lumped together prompted a barrage of tests.

The first round of tests indicated that there was something not quite right with my liver. I had to stop taking all medications cold turkey for 30 days to clear my system and then redo all the blood tests. When the results from the second set of blood tests were delivered the one thing that stood out was the high level of thyroid hormones. Unfortunately, that wasn’t enough for a complete diagnosis. I had to have a thyroid biopsy to rule out cancer and a thyroid scan that involved drinking radioactive dye to see if I had enlarged nodules (noncancerous lumps) growing on my thyroid that might have to be surgically removed or might require the complete removal of my thyroid gland. After all those uncomfortable diagnostic procedures, the good news was that I neither had cancer nor required surgery because either one or both would have meant taking thyroid hormone medication for the rest of my life absolutely never missing a dose, on top of whatever other treatment was prescribed.

What I did have to do was take anti-thyroid medication for a while to stop the overproduction of thyroid hormones. Early on, the dose had to be corrected to deal with the unexpected occurrence of side effects that are supposed to be rare: most notably vertigo that still affects me occasionally. However, the anti-thyroid treatment recreated the necessary hormonal balance within about three years and my Endocrinologist declared that I was safely in remission and could stop taking the medication. I got that good news about a month before my current illness showed up almost four years ago. Throughout this illness, I’ve had to continue having regular blood tests to check my thyroid hormone levels, ultrasound scans of my thyroid to monitor the size of the nodules, and check-ups with my Endocrinologist. When I saw her on Wednesday during my non-appointment appointment she told me that if the results of the blood tests looked good I didn’t have to see her again until next year at this time. Then if my blood test results are consistent through to that time it means I will have been in remission for five years and the likelihood of the Graves’ Disease recurring will be slim.

Where I was frustrated with myself on Wednesday for rushing to an appointment I didn’t have, today I’m quite content because of this good news. My hope is that my thyroid hormone levels stay normal until next year so I’ll have more energy freed up from having one less invisible illness to think about.

 

The words of this song don’t match my good news, but the mood of the song certainly does…

Sam Cooke – (Ain’t that) Good News