Tag: 2019

It’s felt like too much like Friday and throughout the morning I found myself suddenly down and disappointed in moments when I realized it was, in fact, only Thursday. The week continues to drag on.

At least it was a productive day. It’s been a long time since I had one of those. I worked on my first “Bradbury prompts” list and already have a little spark of an essay going around in my head. I wrote over 700 words of it so far, not necessarily good words and I wish there were more, but 700 is a lot more words than I have written outside of my usual posts here in weeks. For it being my first try, and for all the distraction I had to deal with, I’m very happy with the results and anxious to try it again tomorrow, and the day after, and for every day after that until, and if, it no longer works.

After all that writing I felt so good I had to get out into the sun. I went for a walk which turned out to be a bad idea and left me feeling a bit dehydrated and faint through the rest of the afternoon. I keep making the same mistake of pushing myself too far at the slightest sign of improvement and beginning to doubt I will ever change.

I’m stuck at home again. I don’t feel bad this time. I was up a lot last night and this morning I was in pain. There’s nothing I could have contributed like this.

Yesterday my doctor emailed to tell me the lab test had come back. We finally have proof of what I already knew, the inflammation is bad and I am not well. She asked how I was doing on the steroids so far (so-so) and asked me to check in with her in exactly one week. It’s a wait and see game now but it helps to have a healthcare team that follows up and at least appears to care. I have less anxiety knowing she’s just an email away when I need her.

I did make sure to rest more than the last time I took off but I couldn’t help a few cleaning projects and I did make time for a tiny bookbinding project. I needed a new notebook to start my “Bradbury prompts” list in. I needed something portable and ugly enough that I’d have no issues writing in it right away. I made a simple one out of an old manilla office envelope and some scrap graph paper I had lying around. I’ll post a picture later.

My boss’s retirement luncheon was today. We’ve all known he would be leaving for a long time now but the news is really hitting me emotionally today. He has been an amazing boss. The kind that gives you room to be the best employee you can. I wish more managers understood that trying to squeeze every drop of productivity and accountability only stifles passion and kills good ideas before they have a chance to develop.

If you make all of your employees feel important and treat even the lowest level workers as resources for radical solutions and change you can build a better team, department, and company than you could ever imagine.

If you have a boss like the kind I had, the kind that trusts you to do your best work, appreciate them and spread your wings while they will let you. I’m afraid of who will be the next head of our department and worried that I will be reined in and smothered again. Just imagining it exhausts me.

Today started out rough but slowly improved. I am grateful for coworkers who are also friends and who hold me to a higher standard, who support me while I struggle, and who make me laugh. After understanding laughter is the most important thing. Laughter makes you brave, makes you stronger than you knew, makes the hurt and the work so much less and the satisfaction so much more.

Class is still going on and I am still working long hours and still left with so little time for me. It’s ok though, that light at the end is getting closer and brighter by the day. I’ll make it.

This afternoon was hard but for entirely different reasons than the last few weeks have been. I heard some devastating news about a friend and it’s the kind of situation where my help is unwelcome. It isn’t my business or my problem and though I am emotionally invested in the outcome, my involvement will only make matters worse. All I can do is wait, and watch, and hope.

But I’m hurting too. Friendships are risky the same as romantic relationships. We open ourselves up. We let them in, and we have no guarantee that it will last. They can flit in and out, disrupt and damage, or leave you as broken-hearted as any lover. That isn’t to say in this situation I was hurt intentionally or that I have any right to be hurt at all, but I am all the same, and I simply needed somewhere to say that out loud.

The medication is working but not all the time, yet. I’m still in pain in the mornings and the evenings but the middle of the day is a glimpse of glorious normalcy.

Usually I’m nearly normal with in two days so the fact that things are still so bad is scaring me a little. The last two times I’ve tapered off of steroids I had to keep going back up because my body could not stay in remission. I have a feeling this will be the case. Behind every positive step is another fear.

Still, the small relief I feel is everything and I am trying to focus on that. I tried to write, but the day started so late that nothing more than my coffee post will go up and even that will be disappointingly late. I’m hopeful for the rest of the week though. I will make progress on all fronts.

My wife tricked me into getting out of the house today. I threw some clothes on early in the morning to run to the pharmacy. She drove, and it was only after we left she said we were also going to go do a little shopping. At first I was angry. I don’t feel well at all and had planned on going back to bed after the pharmacy trip but I know she was trying to do something nice and anyway, it is a beautiful day and perhaps a little sunshine and a little time among the people, could help.

By the time we were browsing the stores I was feeling better. I got a coffee and a few more gift purchases crossed off of my list. It’s crazy how fast time is moving and how little time I have left to ship it all. It’s hard not to panic. I’ll give myself this last week to finish it all up.

Now we are back home and it’s early enough for me to still get plenty of resting done, or writing, or, more likely, housework, or, even more likely, shows to binge watch. The weekends aren’t long enough. I need a day between Saturday and Sunday, or between Friday and Saturday, a day to do nothing at all without any guilt. Tomorrow will be used up on preparation and then I will be back at it, struggling and miserable. Right now a four-day work week sounds like heaven.

The work week is finally come to an end. I’m exhausted and looking forward to doing as little as possible for the next two days. Since I’ll be starting a new round of steroid treatment to get this flare under control, I have got to give the medication the best chance to work and my body the best chance to heal before the start of another Monday.

But today was good actually. Even though I haven’t been feeling any better until now I believe I am learning to cope with it better. I’m learning how to work and to laugh between the pain and the fatigue. It’s good, but it somehow makes the whole thing sadder too. It isn’t fair I should have to fight so hard and it hurts that I’m the only one who knows the toll this is taking. I suppose it’s just lonely.

Right now the most important thing is that the work is getting done and I can end the week with a little pride, a feeling I’m in desperate need of these days.

I was feeling much better than yesterday when I woke up this morning. I was able to make it into work on time and ready to get back to it. I had energy. I wasn’t in pain. I did my best work. I laughed. I nearly forgot I was sick until after lunch when all my symptoms returned, with a vengeance.

I did get ahold of my doctor though. Thank God for her! She’s already ordered more lab tests and as long as they come back negative for infections than I will have a new prescription by tomorrow afternoon and some relief—hopefully!—by next Monday! There is light at the end of this hellish tunnel I just can’t tell how far away the light is, that’s all.

Soon I’ll get back to being me. I can’t believe I took it for granted, again. Never, never, never again. This time I will not let myself slip into such gross complacency. I will be me again for as long as I can, again. I promise.

I can’t do it today. I just can’t. I woke up this morning still feeling exhausted and just the thought of repeating the stress of yesterday was more than I could handle. So, I’m staying home today and you know what? I feel a hell of a lot better without the weight of the outside world on me. I may be feeling down and sickly but here in my own home all alone it isn’t so bad.

I should have spent the day resting, or even writing if I really wanted to get something done but instead I cleaned the house. Cleaning, after all, is the most satisfying kind of procrastination and I had hours and hours for it today. What makes it so insidious is how hard it is to regret. How can I feel bad when everything around me is so organized now? It’s a space clear enough to think in, to write in, but now I’m too tired.

And tonight I’m miserable again and tomorrow I will be too but I have to go back to work. Resting time is over and I wasted it, but for now the house is clean, my wife is home, and having at least that means everything.

I’m doing better than yesterday but I’m still not okay. I’m teaching a class this week and thank God I’m not on my own. I’m toughing it out as much as I can and looking forward to leaving as soon as I can. I wish everyone around me knew how hard I was trying. It feels good to give my all, to know that I can fight through this disease, but it doesn’t feel very good that I have to; you know?

It wouldn’t be so bad but my schedule is relentless right now and I feel bad for not doing my best work, or, I’m afraid I’m not doing my best work. I’m also in desperate need of some time for myself, to do the things that make me feel better. I don’t know if I mean that. I think I’m in desperate need of the desire to do the things that make me feel better. Right now the only desire I feel is for sleep.