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

 

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…

 

 

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

 

Spring Cleaning Pain

I’m late posting my entry for last week’s ‘IF Draw A Week‘ challenge that I found on Instagram. It’s not because I didn’t complete it. For whatever reason I had more technology hiccups yesterday, so I diverted my attention to do attempt some Spring Cleaning. I’m cleaning because I feel mentally cluttered as a result of my home becoming cluttered. Actually, it’s been cluttered – and my version of shamefully messy – for a while now because I can’t clean the way I used to and the person I had coming to clean my home for me hasn’t been able to be here for several months. Happily, she found a full-time job that pays enough so she doesn’t have to clean other people’s homes anymore to make ends meet.

Sadly, what that means for me is that I’m sinking under the weight of undone chores. It also means that after making any significant effort, as I did yesterday, I pay for it with added pain. When I finally fell asleep last night – it was actually early this morning – I knew that I’d be in for a painful day, and my body has not disappointed as it continues to narrow the parameters of my life. In this instance, it’s a clean house vs. manageable pain, but the cleaning is not finished yet, so I have to prepare myself for the painful days ahead until it’s all done.

However, if I can’t address the clutter in my home in one go, at least I can briefly put aside the clutter in my mind. The prompt for last week’s ‘IF Draw A Week’ challenge was to “sketch something from real life”, and because it’s not possible to draw pain and I don’t want to depict the growing stack of paper on my dining table, I decided to draw some of my art supplies. The objects I drew are a black binder clip, my trusty Staedtler pencil sharpener, and one of my newly discovered – and quickly becoming favourites – Muji gel pens.

My effort to spring clean my home may not have been successful, but I hope that I successfully captured what these items look like in real life on paper.