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

 

When Haste Really Makes Waste

When one lives in constant pain there is only so much energy available for doing things, so making mistakes with your time can be costly. For example, yesterday, I had to muster all the energy I could to get myself ready for an appointment with my Endocrinologist to make sure there are no hidden threats to my health lurking just below my larynx in my thyroid glands. However, nothing in the hours leading up to my appointment seemed to want to go right. Starting with overloading the circuit breakers while trying to make something to eat and running my stove, electric kettle, and toaster oven at the same time – I’m sure the toaster oven is the culprit because this never happened with my old one –, which resulted in partially toasted bread for my egg and cheddar cheese sandwich.

I’ll skip over showering and getting dressed because that’s an ongoing battle whether I’m rushed or not, and go right to traveling to the appointment. I ordered a ÜberX pick-up to get me to my appointment a few minutes early because my Endocrinologist may be the most efficient doctor I know so she is always on schedule. As I made my way out to the street, I called the driver because the Über app was still showing him as two minutes away, which is what it had said 2 minutes before. When the driver answered my call, he said he was waiting right outside my home. Of course, I couldn’t see him because once again the location-finder GPS in the app sent him about a block away from my home. When I told him this he seemed annoyed but said he would turn around and come get me. Luckily, I hadn’t closed the app and noticed that he canceled my pick-up.

At that point, time was ticking away and there were no available taxi cabs in sight so I ordered another ÜberX. This time I manually entered my address and searched for my destination, which I selected from a list of in-app suggestions. Can anyone see where this is going? The driver arrived within five minutes. I told him I was running late. He assured me he would get me to my appointment on time. He set off driving down a street, where at that time of day, promises slow-moving city traffic, but he was certain he would get me there on time regardless. I tried to let go of my anxiety and started to chat with him about why he chose to become an Über driver, which is a conversation that tends to deliver a wide array of responses: his was simply the convenience of managing his own schedule.

Within a few minutes, he announced that we were arriving at our destination, which for so many reasons wasn’t possible. When I looked up, I saw the wrong hospital in front of me. I looked at the Über app and realized that I had, of course, selected the wrong address for the hospital from the app-generated list when I ordered the second pick-up. Editing the drop-off address only made things worse because who knew that the hospital had so many clinic locations listed under its moniker. This course correction led to what might have been a hilarious sketch out of a sit-com, were it not for the fact that I was anxious about not making it to my Endocrinologist’s office before she shut the door for the day.

I directed the driver to take a back street shortcut where at the end of it we had to choose between joining slow-moving traffic again and trying to find the right one-way street to get us back on course. I opted for finding the one-way street, which all turned out to be designated to go in the direction opposite of where I needed to be and we landed on a main street with streetcar lines that ensured that our travel time would be extended. I called my doctor’s office to let them know I was running late but they were done answering calls for the day so I dropped right into voicemail. I left a message, which I’m sure was met this morning by a furrowed brow from the office administrator.

To get us out of the panic-inducing stop-and-go traffic, the ÜberX driver turned down a one-way street that could get us to a hospital entrance within a few short minutes. But… we missed the turn-off for the next street that would finally lead us there. He decided to take a chance at backing up to save me time, but there was a car coming down the one-way street behind us that made reversing an impossibility. By this point there was nothing to do but laugh. We were both laughing at what might be the most painfully comical Über ride experience for us both. We followed the street to its end then drove down two more streets that finally got us to the rear entrance of the hospital. I thanked him profusely for doing his best to get me there on time and only missing the mark by ten minutes after all the confusing stops, starts, and turns.

Then I walked as quickly as my very sore legs could carry me to the Endocrinology Department offices. To my relief, the doctor’s office door was still open and she was there, talking with two of her students. When she looked up and saw me, she smiled and asked what she could do for me. I apologized for being late for my appointment and she looked thoroughly confused. She told me I wasn’t booked for an appointment and double-checked her patient log for the day that I certainly was not on because my appoint, that I so determinedly tried to get to, was scheduled for June 19th, which was five days away. I had mistakenly entered it into my calendar for the incorrect date.

Thankfully, she’s a patient-focused doctor. Instead of making me return in five days, she sent me to the lab to do my blood tests and stayed after the office should have been closed, to see me. So I guess, as much time as I wasted by rushing to get to my appointment early – I do see the irony in that statement – the day wasn’t completely squandered.

 

Rush – Closer To The Heart

 

Today I’m Reminded…

Today – and most days –, I’m reminded of a woman who I was fortunate to know in my lifetime: She was my Great Aunt M and she was one of the most kind and loving people I’ve ever known. Today is the day she was born and I prefer remembering it than dwelling on the day I witnessed her passing away. Even though I live thousands of miles away from where she once lived, and can’t place yellow flowers on her grave, I pay homage to her memory as often as I can because I learned so much about compassion and unconditional love from her.

She was the kind of person who, although quiet, was strong. Not everyone can survive being put on a ship alone as a young adult and sent thousands of miles away from your family to make your mark in the world. Not everyone would have been able to thrive in a place where they knew no one, but had to prove themselves knowledgeable and capable of saving lives from the very first moment they reported to a new job, but she did. Every person whose life she touched, in even the smallest way, still remembers her. The goodwill of her deeds still lives on in the community where she lived, eventually married, and raised her children.

I’ve been the beneficiary of that goodwill each time I’ve visited her small town and someone has made the connection between who she was and who I am. The pride felt in those moments is overwhelming, and added to the love and respect I already felt for the woman who loved me my whole life. It also made me feel more fortunate that what I know of her came to me, not from her professional life, but from moments that are more intimate. Times where I was fed favourite meals by her, walking with her through the streets of her town on cool summer mornings, sharing cups of tea with her dearest friends after shopping in the local market, or receiving small gifts that always arrived in time for my birthday.

Her memory keeps me positive because every time I think of her I know that somewhere inside me lives the things she taught simply by living her life. I know that I can be strong and survive anything life throws my way. When I am fearful, I know that the courage I need to overcome whatever I’m facing is within me. I know a smile and words of kindness can go a long way to make another person’s day or life better. When I am sad, I have wonderful happy memories in which she lives that I can recall. I know the value of doing good in the world because her work and its legacy live on. Most importantly, I know what it is to be loved unconditionally and what can come of giving love in the same way.

Today I honour the memory of my Great Aunt M and I am grateful I had the opportunity to know her.

 

 

Peanut Butter and Bananas

Some days are harder than others are.

On a day like today when my entire body feels sore from the moment I open my eyes, it’s hard to imagine anything that can help make me feel better. One would think all the pain medications I take might do that; but they only make it possible for me to cope with the always-present pain and the soreness, which is a by-product of any movement or exertion I make with my now atrophied muscles.

Today, however, there was one thing that made me feel wholly better for a short time. I made myself a peanut butter and banana sandwich. My version of a comfort food that I’ve been eating for as long I can remember. If you’ve never tried one, I suggest that you should, at least once in your life. Because, for me, peanut butter and banana sandwiches make everything feel better…

 

 

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…