Tag: Journal

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It feels like it’s been months rather than weeks since I last had to get up and get anywhere on time. Today is my infusion appointment. My third out of the first four they call the “loading doses”. Getting out of bed and then getting ready was difficult. I’m just not used to it anymore but at least we were able to leave the house a bit later this morning knowing that there would be minimal traffic on the roads.

I’m hear now and about halfway through the bag of medication. I’m not in the small windowless and cramped room they had previously shoved quick infusion patients like me into. No, I’m back out in the big open room, but it’s not as cheery as usual.

The blinds are drawn and there is no sun or mountain views from my comfy recliner, and the place nearly empty. The nurse working with me explained that most infusions have been cancelled to reduce spread of the virus. Only chemotherapy, inflammatory bowel, and other patience who are relying on this place to keep them at optimal health are allowed in now. I’m ashamed that made me feel important.

I hope by the time I come back at the end of May things will be a little more like normal again and though that means I’ll most likely be back in what my wife calls the “broom closet” for my infusion I need the sun and the people, the smiles and cheer. This place, though by definition is a sad one, has paradoxically always been a source of encouragement to me.

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It turns out Wednesday’s are the most boring day of the week, whether you are in social isolation or you are working. We have nothing going on and nowhere to go to change that. The weather is gorgeous at least, and we can have the windows open. We can bring the outside in since we are avoiding bringing ourselves out.

It’s the time of day when I allow myself to check in with the news. I’ve been obsessive about the local news lately and have created a list on Twitter for Colorado news outlets and political institutions and organizations only. It seems the rumors I was reading were true and beginning tomorrow morning the entire tri-county area will be under a “shelter in place” order. Not much will change for my wife and I. Since schools closed down weeks ago, we’ve been socially distancing longer than most. We only leave for groceries or to walk around the neighborhood, and tomorrow, to take me to my infusion appointment.

I’m noticing a disturbing trend in which the President says a lot of things that cause panic and incur criticism, but it seems he has very little influence over what is actually happening in the real world. He’s talking about reopening businesses and sending people back to work while our political leadership here doubts the school year will resume before summer. I’ve decided not to even listen to the President during this time and to receive information and take guidance from my local leaders, Governor Cuomo (who has been conducting daily thoughtful and encouraging press conferences), the Center for Disease Control, and the World Health Organization.

I’d advise you all to do the same.

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I’m feeling much, much better than I was yesterday, both physically and emotionally. I think I know now what happened and where the pain came from.

My GI doctor had called me while I was in the morphine haze and I didn’t quite catch it then but I remember now that she mentioned a bit of fluid in my abdomen that could be seen on the CT scan. She mentioned there may have been a cyst that ruptured, but she didn’t sound concerned. This morning I looked up the symptoms, and it sounds exactly like what I went through. I also posted in my ulcerative colitis support group and had a member confirm she had been through very similar and it was also a ruptured cyst.

I feel reassured and validated. I feel like it was reasonable to be seen by a medical professional and it was worth the trip to. I also feel angry. I’m angry that the nurses and doctors were so dismissive and that they rushed me out the way they did. I’m angry that I never get the answers I’m seeking from them. I’m angry for all the pain I’ve dealt with in the past because I was brushed off.

Physically I’m feeling better too. The pain is slowly dulling and dying away. I’m able to move around and I even got out of the house with my wife for some grocery shopping. And, I have to say, I’m really enjoying this social distancing thing. People are more polite, more respectful of boundaries, quieter. The general public has become pleasant to be around. I hope we all retain some of that niceness once the world and real life begin again.

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I woke up this morning, and everything was fine. The pain I’ve been feeling for the last couple of days was there, but it was dull. I could still do my morning things: making coffee, caring for the pets, watering the plants. Then, suddenly, the pain got very bad, very bad! I was doubled over, crying, sweating, nauseous, and dizzy. Something was very wrong, but I tried to lay down and wait for it to pass. I called the GI nurse, but she told me all I could do was go into urgent care. So I did.

Of course with the coronavirus spreading I was reluctant to go but I know my body and this pain was some of the most severe I have ever felt, but it wasn’t new. A few years ago I went through this too. Usually ulcerative colitis pain is on this left side, but this is on the right and only on the right. It’s low and makes me think my appendix is about to burst, or maybe I have a hernia, or perhaps a tear in the bowel. Last time I was scheduled for a colonoscopy and they found nothing and eventually the pain went away but even when it was at its worst it was nothing like this.

When I arrived at the urgent care center, they gave me morphine for the pain, ran some blood tests, and gave me a CT scan and…found nothing. Or nothing much, anyway. Nothing that would warrant their time, attention, or care. I was quickly unplugged from the I.V. and sent on my way with instructions to drink more water, eat more fiber, and feel better soon.

I feel deeply embarrassed. I feel as though I wasted everyone’s time. At the same time, I’m worried there is something they missed. I was in so much pain something has to have been wrong and, honestly, it’s not like they haven’t missed a diagnosis before. I’m trying not to be too hard on myself. I’m focusing on feeling better, both emotionally and physically, and I’m searching for answers on my own.

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I’m back in the creativity room again and it feels really good. The couch is nice but the T.V. is distracting and to be honest as much as my wife and I love each other it isn’t good for us to be in the same room too many days in a row. I’m grateful not to have to go through this social isolation alone, but it does require an adjustment period and a lot of sensitivity and flexibility when you are married. We’re working out how much time together is too much and how to express thoughtfully and sensitively whenever either of us needs space.

I’m glad it is a given that both of us would have different schedules and projects around the house throughout the day, just as if we were at work. We’re still working out how which part of the day should be spent together, but I think the answer is easy, the evenings and weekends as it’s always been.

So far we are coping with the shut in okay. I’m more worried about my loved ones, some of which are still being expected to work and others who have found themselves temporarily unemployed and without pay. I worry they will get sick and I worry they will lose their homes or have their utilities shut off.

And the worry is taking a toll, too. My stomach has been hurting for a couple of days now and only getting worse. I’m worried about another ulcerative colitis flare. That’s the last thing I need to deal with right now. (Although on second thought if I had to go into a flare this would be the best time. Well, if it weren’t for the shortage of toilet paper, that is.) I know the healthcare system has bigger worries and I am sure my doctors are otherwise occupied. I don’t think I would have the usual support if I flared right now.

It seems there is no part of life this pandemic isn’t touching.

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Today is a do nothing day. I’ve spent it in the bright and roomy corner of the couch reading while the cat and dog alternate turns cuddling with me. My wife is at the other end playing all the Divergent movies back to back. Her foot taps mine every once in a while to reassure us both, and between movies we alternate fetching snacks. It’s a true Saturday, not just a day cooped up at home. It helps if you feel like you chose it; you know?

I’m not in love with the book I’m reading but I’ve put in so much time and tried so hard that I have to see the nearly 1,200 page tome through to the end. I would have finished It by now if it weren’t for the sheer size of the thing and I’m rethinking my aversion to ebooks again because of it. I recently had a chat with an old fan of the blog and his questions reminded me that I have an old iPad lying around that could serve as an e-reader once I delete every other app installed.

When I’m done with It I’ll give e-books a real try. I have enough money in gift cards to try some contemporary reads without investing too much.

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It’s getting harder and harder to find a routine. My instinct is to treat every day like it’s Saturday until the Sunday before I must return to work finally comes along, but Saturday’s have always been about escape. They are about anything but work and routine. Every weekend was all fun, and rest, and fulfillment, until finally, they had to be for preparation, but they were never the work or the routine.

A month or more of Saturday’s sounds like fun, but time spent only in rest and escape is just as off-balance and unhealthy as life too devoted to work and productivity.

Before this age of social distancing, I spent my free time trying to work out how to include leisure in my life. Now I’m trying to find time for work. What is my work now that my day job is closed? What can I do now that I must do it alone and from home? How can my days be structured, so that something is being accomplished and a healthy balance is being achieved?

These are the kinds of questions I am trying to answer now and my worry is that by the time I answer them it will be time to return to the old balance and routine and I will have wasted time overthinking my role in this pandemic.

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After many long months of winter the first day of spring is finally here and in true Colorado fashion it is also the first day of snow we’ve had for nearly a month. Rain was falling softly when I woke up, but within a couple of hours the flakes were falling and the snow was beginning to stick. The wind is blowing hard now, and it’s clear we will stuck inside for at least the next few days.

My wife woke early and figured with the virus spreading and now a snow storm hitting it might be a good idea to head to the grocery store and pick up a few things, or whatever we can find. We’re growing increasingly worried about a “shelter in place” order and increased panic buying from the public. We’re worried the supply chain being disrupted and being our one-two week store of food running out before society stabilizes.

Since it was early, she was able to bring home toilet paper, cereal, and a little meat to freeze in case, but she said there wasn’t much and the trip was somewhat nerve-wracking. I’m hoping we won’t have to go back out again until sometime next week. 

Other than that, we are doing fine. We’re bored. We’re eating too much. We’re sleeping too much. Our nerves are growing a little frayed, but we’re fine. I think as soon as the weather turns around we’re going to go hiking. I’d like to go hiking as much as possible during this time of social isolation. Immersing myself in nature feels like the only salve for this never ending anxiety and fear I feel now. 

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I got up a bit earlier than yesterday. I’m trying hard to keep to some kind of schedule and to make sure when I do get up that I am not just watching T.V. (especially the news) and I’m not just scrolling social media. I am losing the battle to limit myself, but it’s so hard now that life as we know it is changing by the hour.

The weather was gorgeous today and, knowing tomorrow would be quite the opposite, my wife and I opted to unplug and get out for a long walk with the dog. It felt good to move my body, to fun and laugh and to pretend for a while that everything was back to normal again.

The relief didn’t last long. As soon as we got back home, I started seeing reports and rumors about another extension of the already extended Spring break. The Governor announced today that it’s becoming increasingly unlikely that schools across the city will reopen before summer break. My mind is struggled to wrap around the idea of two weeks away from work, two months or more away is unimaginable. It already hard enough to stay busy and to keep our minds occupied as it is, I’m not sure how we will make it through another month.

Or, I know we will make it, but I’m not sure what we will have to do to make it or how we will have changed when we do. I suppose that applies to each of us, no matter what our location or circumstance is. I suppose this applies to us all as a collective city, state, country, and species.

News just came in that all Colorado school districts will be closed for the next month. We will not return until April 20th, at least. It’s nerve-wracking, but at the same time I am so grateful. I know I am one of the lucky ones by far. I will be getting paid for this time off and I’m not even being asked to work from home. I know that, financially, I will make it through this just fine and all I have to worry about now is keeping the food and essentials in the house.

Since we are so lucky we’ll be looking for ways to help those less fortunate than us get through this confusing and terrifying time whether that means volunteering (unlikely due to both of us having chronic conditions) or through donations in the form of cash or goods. We’ll be ordering food through take out or delivery and buying gift cards to help keep local businesses afloat.

We’re all in this together and my hope is that by the end, whenever that is and whatever that looks like, the world will have changed in every way for the better. My hope is that this will be a reminder that humans cannot survive or thrive without other humans, and we learn to care a little more for one another for the good of us all. I don’t want all of this to have been in vain.

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I’m up a little later than I wanted to be (the story of my life) but not later than I need to be. I have time for a few words here and to prepare for my CPR Instructors course at a leisurely pace. My anxiety is sky high. This is very far outside of my comfort zone and my usual schedule and to my body and many parts of my mind that means danger. I’m trying to stay calm, to breathe, to be confident, but I’m battling myself and those battles are the easiest to lose.

Still, I am somewhat excited too. I’m excited about what comes after today (and after the world begins to recover and life returns to some semblance of normalcy and safety). I’m excited to be able to teach people how to save lives. Like, how awesome is that? I get to teach people to save lives! So, even though my body is indicating otherwise, this is far from bad or dangerous. This is actually really exciting.

I’m done! I made it through almost 7 hours of CPR instructor class and passed with flying colors. I demonstrated my skills, passed the written test, and learned how to help people perform the same skills more effectively. The class as a whole was easier than I anticipated, but longer. It was also a little strange to take this course in the midst of a global pandemic.

Precautions were taken to avoid any close contact between my classmates and I. We sat 6 feet apart and did not share any equipment, and after leaving or entering the room we had to wash our hands and use hand sanitizer and the entire room was disinfected while we went to lunch.

All the restaurants in the city are either closed or offering take out or delivery only. It’s hard to know which is which though until you get there. It took a few stops, but we finally found a burger place who’s drive through was still open. It’s strange to think about how much and how rapidly the world has changed in just the past few weeks. It’s disorienting, upsetting, and somehow, freeing.

Everything can change whenever we want it too. For better or worse, the world can be anything we want it to be, and it doesn’t have to take lifetimes. We’ve proven that much.