March 2020 – Lisa Marie Blair

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I had a phone appointment with the doctor today and for the first time in a long time it was all good news. Starting tomorrow I can begin tapering off of the medication I have been on the longest and which has done the least for me and next month I can start tapering off of the mild steroid I was put on. By summer I’ll just be taking supplements and going for half hour infusions every other month. It’s a dream come!

Less than six months ago I was worried about how close I was to surgery and losing my colon forever. I was worried about more medications being added and never getting out of the painful flare I was in. I was feeling so down and hopeless, but I’ve got an awesome support team and a body that is always frustrating me but is always fighting to heal the best it can.

On the flip side, I also had to make a series of phone calls to the financial department and the drug company’s patient assistance program to try to work out paperwork problems and payment delays. I’m lucky to be getting help to handle the infusions costs which are thousands of dollars each but the stress of submitting proper forms and making sure the two sides speak and knowing that if something goes wrong, I will be the one held financially responsible is incredibly stressful, and I’m supposed to be watching my stress levels.

I spent the rest of the day in the “creativity room”. I was supposed to be cleaning but spent the time writing instead. That’s a nice change from the norm and feels like a good sign of progress. Perhaps that is the key after all, using writing to procrastinate when I have other things to do rather than doing everything, anything, else rather than writing.

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Another productive day, though not as productive as yesterday.

The month is finally about to end and I am so ready to let it go. There was a time a week ago maybe when I started to believe the month would never end and we would be trapped in this purgatory forever, but the calendar is about to change over and prove that time is in fact marching on. I’m ready but still resentful over the time lost.

I’m not the kind of person who believes the universe is listening or that any petty wishes or wants of mine are heard but I’m painfully aware now of all the time I wished the world would stop so I could rest for a while and I long to take the words back. I keep thinking, “This is not what I meant. This is not at all what I meant!”. Now all I want is for the world to start again, please?

I’m considering joining a blogging challenge for the next 30 days. I need something long term to keep me going and a push to write more than just these journal entries. I had thought to join the A to Z challenge, but I have no theme and no letters planned. I found out today that the nice people of WordPress are doing their part to spread the sense of community by offering daily writing prompts through the month of April.

I’m not promising to write any certain number of posts for any certain number of days, but I think I’d like to try my best and see where a little regular and focused micro-blogging might take me.

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I’m feeling much more productive today than I was yesterday. I got up a little later than I meant to, but I got started right away on cleaning and marking off a few persistent items from my to-do list while my wife ventured out to find us some groceries.

It took her two stores, and she still didn’t find any toilet paper. We aren’t low, and she may try again in the morning. She also had to stop by her job for a few things to continue working from home. It terrifies me every time she leaves the house, but we need things. We have no choice.

Soon I will work on writing something and perhaps, if I don’t wear out my will or motivation, I’ll get around to finishing one of these damned books I’ve been struggling with for months.

Today marks 90 days into the year and nearly the end of another month. Who would have thought the year would turn out like this? Who would have thought the Spring would bring such tidings of fear and death? I always think I’m being over dramatic or weak, but every day the numbers of infections, hospitalizations, and deaths increase and the projections and predictions grow more dire.

I hate being stuck inside. I’m bored and irritable, but it’s the only place I feel safe now.

Goals // Week 14: Find a Way to Stay Sane

This week will marks our third of social isolation. I had hoped it might get easier as time went on and as I settled into acceptance and a new routine, but it has only gotten harder. I am surprised to find I do not have the urge to leave or to find things to do, but rather I’m fighting a strong desire to sink further and further into apathy and lethargy. I’m also experiencing irritability and mood swings and a new kind of anxiety that, though it is duller and less defined, is quite large and widespread. This week I expect things will get harder not just for me but for everyone, everywhere and we will all have to find a way to stay sane through it all.

This week I will:

Practice more self-care. When you have nowhere to go, it’s easy to let yourself go. For me work has always been my reason to wake up on time, to shower, to get dressed, to do my hair. Without the prompt of going to work, I found I simply forgot that I still needed to do those things. It will be late in the day when I remember I’m still wearing pajamas and haven’t eaten anything at all. This week I want to start a new “wake up” routine in which I carefully and deliberately take care of my basic needs before doing anything else.

Teach the dog to roll over. The dog has been loving all the extra walks, extra play time, extra attention and cuddle time she’s been getting and I figure why not take it a step further and make it extra learning time too? She already knows sit, lay down, stand up, turn around, shake, back up, jump up, fetch, and “drop it”, but roll over has eluded her. She loathes to be on her back and most of my efforts so far to teach her have resulted in confusion and frustration for us both. I have a new technique though and I think this week we just might get it.

Be more active and see more of the sun. The mornings are still too chilly to get back to my old jogging habit but the afternoons have been warming by the day and are just as good a time as any for me to get out and around the neighborhood. I’ve been too cooped up and though I crave to sink further into this isolation, the best thing I can do for my mood and spirit is to remember there is still a wide world out there to return to. I need to get out of this house and out of my head, and the only way is to grab the dog and spend some time in the sun and spring air.

Spend time away from screens. I had been doing a commendable job curbing my obsessive consumption of news in an effort to quell my anxiety but over the last few days I’ve slipped back into my old bad habit of watching, scrolling, and searching for updates all day long. These devices are just too tempting to misuse, and it’s too easy to make excuses to get around my own rules and boundaries. This week I will set up a schedule for screen time and tie that I am to put away my devices and find more analog things to do with my time.

Finish reading It by Stephen King and book eight from my Penguin Little Black Classics book set, A Modest Proposal by Jonathan Swift. I’ve been getting a lot more reading time in these past couple of weeks, and I cannot let myself lose the momentum. I have just over 100 pages to go now for It and less than 10 for A Modest Proposal. Those are both entirely reachable goals for the week. If I keep up this pace, I’m sure to catch up and ultimately get ahead of where I should be by now if I want to beat my 50 book challenge for the year. Bonus: Finish book nine too, Three Tang Dynasty Poets.

Get more cleaning done. I have been lax about disinfecting the house, especially after either my wife or I has left and come back or after bringing in items from the store or having items delivered to the house. I’ve read a lot of different timelines for how long the novel coronavirus can live on various surfaces but the CDC had a handy page of guidelines for how to clean different type of surfaces and materials and recommends going over “high touch” areas daily. The is the second most important thing I can do for my family right now, the first is to…

Stay home. It’s hard to stay in and when we start feeling cabin fever coming on and loneliness creeping in we make excuses for why it’s okay to head out for a little non-essential travel. I’ve seen videos of people visiting friends and family and congregating far too closely in public spaces. I’ve been guilty myself of going to stores not just for groceries but to simply browse the aisles, anything just to get out of the damn house! But doing these things puts us all at risk and the truth is no matter what your gut tells you it just isn’t worth it.

This week I will not let the walls close in. This past week the President announced that the CDCs social distancing recommendations would be extended through the month of April and I have serious doubts I will return to work before the summer. That means I have to make peace with this seclusion and find a way to joy and fulfillment within this tiny space. I have to learn to self start, self motivate, and self sooth. I have to get used to not having time away, or alone. I have to use my imagination and to start where I am using whatever I have on hand.

P.S. For a look at how I fared last week check out my updated post for Week 13.

Photo by Jason Krieger on Unsplash

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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.

Until then, stay safe, all of you.

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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.

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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?

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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.