Lisa Marie Blair

Tag: March 2020

  • 108//366

    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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  • 091//366

    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.

  • 090//366

    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

    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

  • 089//366

    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.

  • 088//366

    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.

  • 087//366

    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?

  • 086//366

    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.

  • 085//366

    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.

  • 084//366

    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.

  • 083//366

    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.

  • Goals // Week 13: Loose Expectations and Broad Guidelines

    Goals // Week 13: Loose Expectations and Broad Guidelines

    This week marks the beginning of my “extended Spring break” and the second week of social isolation. The days are very much running together and I am finding it hard to establish a schedule or settle into a routine. How can I when I don’t know from day to day how things may change? How can I when there’s nothing to do but worry about yourself, about your loved ones, about every damned thing in the world? Still, I have to try. I have to put together some loose expectations or some broad guidelines on how I should spend these days away from the rest of the world and my work. I have to do something to stay sane.

    This week I will:

    Spend at least an hour a day in the “creativity room”. While a month of binge-watching whatever Netflix keeps trying to get me to watch while scrolling through a rotation of social media apps sounds great, I would really like to make better use of my time even if I’m not sure yet what it is I want to do or accomplish. I’m not putting too much pressure on myself for output I know that nothing good—nothing at all—will come from spending my days on the couch. I have to get up, get ready, and get to a place where I can find the work I want to do.

    Update: I tried to stay motivated and productive, but I underestimated how much staying at home all day every day would affect me. There were many days when I hardly left the couch, hardly ate, and hardly took care of myself. So, I did get in the “creativity room” for a little while there were many more days where I simply couldn’t fight my way out of anxiety or melancholy to make any progress. It’s surprising how much it turns out that I need other people to cheer and focus me.

     Set alarms for daily activities. I didn’t realize how much of my days were decided by my day job. I didn’t realize that all my prompt, my cravings, my wants, needs, and thoughts were all decided around the hours I worked. Now that I have no hours I can’t for the life of me remember what I am supposed to do and when. I used to have alarms on my phone for things like meals, medicine, even water and walking breaks because I would get so caught up in what I was doing. I think it’s time I go back to that.

    Update: The alarms have been set to remind me to wake, to take medication, and to go to sleep. I’d like to add more, to utilize reminders for other regular chores and to-do items, and to start setting timers to help me move through reading, writing, and cleaning, to remind me to work through one task at a time, and to keep track of what tasks are next. Habits are hard to establish, and there is no shame in seeking help.

     Complete one small house project. The laundry room is in desperate need of a deep clean. The basement storage area needs purging. The water heater needs to be drained for the season, and the roof over the back deck needs repairs. Those are just a few off the top of my head projects I could do around the house to pass the time, keep my mind occupied, and achieve a feeling of accomplishment and usefulness. More than writing, or reading, or finishing a course, this would be the best use of my time stuck at home.

    Update: Again, it’s been hard to find the motivation, but the energy has eluded me too. I did have my infusion this week, and perhaps I was asking too much of myself after being pumped full of medication. I’m always a little fatigued after these things, and I failed to remember that. Luckily the feeling fades quickly and I should feel a little more myself in the coming days.

    Read to page 900 of It by Stephen King. I’m making a lot of progress through tis book so far, and if I keep up the pace, I could very easily finish this massive novel by the end of next week. The trick is to give up some social media time and devote it to reading time, which hasn’t been so hard now that I’m limiting my access to the news. I’ve moved my news check time to 5:00 PM and around 7:00 I put my phone away and take out my book until it’s time for bed. Bonus: Finish two books from my Little Black Classics set and choose an ebook to download and read from my old iPad.

    Update: I’ve been spending time reading almost every evening and a couple of days I made sure to read away from the TV and from my phone in order to avoid any distraction. The effort paid off, and I was able to make it all the way to page 1,045 and have just over 100 left to go. I decided to focus fully on reading It since it’s such a long book and skip the catching up on my Penguin Little Black Classics. Going forward I am going to keep my reading goals much more narrowed and focused until I can finally move on from this tome.

    Keep in touch with my family and friends. Last Friday, I checked in on my friends. Yesterday my dad called and last night my wife and I joined a “family day” call on Snapchat. My cousin calls regularly to check in on us, and I’ve been texting my mom every other day or so. I miss everyone so much and I am so worried all the time for them, but it helps to call, connect, and vent. It helps to hear they are fine, they are hopeful, they are getting through it the same as me. For my mental health, and for their’s too, it’s important not to forget to reach out.

    Update: Time simply got away from me and I didn’t get to make all the calls I wanted to. Most of the checking in I did was after others had called me which was good but if I’m honest was not what I meant when I set this goal. I am happy to report that as of right now all my close friends and family are still feeling well and many were able to begin working from home and others who were without work found temporary work.

    Stay well, emotionally and physically. I haven’t been feeling great these past few days and I’m really worried about either contracting the virus or falling back into an ulcerative colitis flare because I am worried about the virus. I’ve already been washing my hands more, using hand sanitizer, and drastically limiting my exposure to the general public, but there’s more I need to do for me too. I have to take all of my medications and my supplements on time. I have to eat regularly and eat healthy. I have to limit my access to the news, and I may even start meditating again. I should get out and walk around the block more, see the sun, forget the crisis all around me.

    Update: I haven’t been great at taking all of my medications or eating meals on time but progress was definitely made. I made it to my infusion appointment, ordered all of my medications that were getting low, and took every precaution when I had to leave the house. My wife and I are both feeling well and avoiding leaving the house as much as possible. I’m still very worried that in a week or so one or both of us will come down with symptoms but all I can do is take it day by day and today we are as well physically and emotionally and anyone can expect.

    This week I will not feel guilty for enjoying this time. I have flashes of happiness and contentment over my spontaneous staycation away from work, and I almost always feel bad for it. People are suffering and dying, losing money and losing their homes, and I’m not, but that doesn’t mean I don’t get to be happy either. Who knows what hardships are in my future too and the truth is any shred of joy or even peace that I can find now may be just the kind of memory I will need to hold on to later when times turn rougher and more uncertain.

    P.S. For a look at how I fared last week check out my updated post for Week 12.

    Photo by kyler trautner on Unsplash

  • 082//366

    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.

  • 081//366

    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.