Today is another do nothing day. My wife is up and about cleaning the house and getting things done while I lay on the couch surrounded by warmth and guilt. This is exactly what I have been trying not to give in to. It’s too easy to do nothing when you know you don’t have to do anything and it’s hard to do anything when all the bad surrounding you is so much bigger than any good you could do or make.
I know it isn’t good to let thoughts like this fester but I also know the limits of my willpower and though I may have lost the battle with myself today the war wages on. We all need a day to wallow and perhaps it only normal and not worth beating myself up over. Sometimes the way to win is to give in, you know? What I mean is, I can’t change how I feel today, but I know accepting it will help me go a long way toward a better outcome tomorrow.
One of my medication is on a national back order. That means I can’t have it shipped to my house, and rather than a 3-month supply, I can only get one at a time. That means taking more risks. I’ll have to go into the pharmacy and more often too.
They have medical personnel just inside the entrance to the pharmacy asking everyone who enters whether they have symptoms of Covid-19 or if they have been in contact with anyone who has symptoms. They’ve also started taking people’s temperatures as they enter, too. I got through the line, making sure to stay 6 feet away from the person in front of me, and when I received my medication, the pharmacist looked at me solemnly in the eye and told me to stay safe. It was unnerving, but somehow comforting too.
We’re in this together. We understand the stakes and we wish one another safety. That’s all we can wish for one another now.
The only thing worse than being stuck inside is being stuck inside on a cold and gloomy day. I hear we’re going to be getting a bit of rain and maybe snow but since we haven’t had the need, or ability, to go anywhere I haven’t been playing very close attention to the weather reports. All I know is I can’t even open the widows for a bit of fresh air. Some days social distancing is harder than others.
My wife has her first video conference for work today. I’m strangely a little jealous. I can hear them laughing, showing off their pets, and just talking. I haven’t talked to anyone outside of my close friends and family in weeks. I miss acquaintances and even strangers. I miss feeling important or useful. I suppose I just have to accept that I am not, in fact, an essential worker.
On the other hand, debt collection agencies have been deemed essential businesses, so perhaps the term is super subjective.
Since we can’t go to the movies, we’ve started doing movie nights at home on Fridays. Tonight we are watching Emma. I read the book a long time ago, but I’ve never watched a movie adaptation, unless you count Clueless, which I’ve seen approximately a million times.
This version reminds me very much of Clueless and, unfortunately because of the generation I was born in and the cognitively vulnerable of the time it was released makes it forever the superior adaptation in my mind. I should have chosen to watch Little Women instead, but I was worried I’d feel the same way. How could there be a better Jo March than the one played by Winona Ryder?
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.
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’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.
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.