091 // I Can Move Again

Starting new medications means trading one set of side effects for another, and this causes the paradoxical condition of both feeling better and feeling worse at the same time.

My energy has returned, my joints so much feel better, and I’m no longer feeling bloated and heavy from the moment I wake up to the moment I lay down to sleep at night. Instead, though I have rolling headaches and nausea, and sharper pains in the belly that come and go.

It’s hard to gauge whether one medicine or another leaves you better off or worse but for me and for this medication, the relief from joint pain alone is a godsend. Not only can I move again, but being still is no longer painful either.


These entries are inspired by Thord D. Hedengren

080 // My Big Girl Pants

I put on my big girl pants and went back to work today. I held my head high and acted unbothered. There were a few fumbles in the beginning but for the most part, it was a good day. I got to do the work I wanted. I felt useful, and for the most part, was left alone.

And now my weekend can begin. I took tomorrow off for no reason other than I just wanted to. I probably shouldn’t have. I’ll probably regret it and I’ll probably miss the money, but for now, it feels good. I always sleep best when I don’t work the next day and God damn am I exhausted. I need this.

Next week is already stressful, sigh.


These entries are inspired by Thord D. Hedengren

079 // Repairing the Day’s Damage

First thing this morning I got an email from the doctor, my liver results still don’t look good and further testing, and further med changes may be in order. I read the email in the car while my girlfriend drove us to work and I nearly broke down in tears. I’m just so tired of it all. Tired of being tired and tired of all the reasons I’m tired.

I got to do more of the new work I was doing yesterday and that took my mind off of things but then my anxiety and health issues came up at in front of my boss, and her boss, and many of my coworkers, and I spent the rest of my day feeling like everyone was looking at me, talking about me, feeling sorry for me, or judging me. I felt exposed and embarrassed, and I ended up having to leave early because I couldn’t handle it.

When I got home things got better. I pulled up my to-do list and one by one marked off all the things I’d been putting off. I darted around the house, inside and out, and for everything I cleaned up, took care of, fixed, or put away I felt a little better about myself. And now, it’s time for bed, and I’ve nearly repaired the day’s damage, but it’s going to be hard to return in the morning and face all those faces again.


These entries are inspired by Thord D. Hedengren

066 // I’m Happy Too

I’m stressed, exhausted and irritable today, but I’m also feeling so, so happy too.

My doctor did call to yell at me as I expected she would when I set up the appointment yesterday. At the same time, she was professional and compassionate. She’s worried, but she also cares. We’re moving forward and I have more blood tests to do and a new schedule for future ones.

My sister flew into town last night, which is why I am both exhausted and happy. I was out later than I should have been to be with her, her kids, our other sister, and my mom. We had fun. We always do when we are together, but it’s more than that. Sisters, no matter how difficult or annoying they are, or how different they are from you, they know you. They might not always get you but they know you better than anyone.

They live their lives beside yours, for all of their lives if not all of yours. It’s a gift too many of us squander and I am determined not just to be grateful for them, but to give them a reason to be grateful for me in return.

I still had to get up early this morning for work, which explains the irritability, but I’m trying my best to keep my spirits up. I’m off tomorrow for my brother’s wedding and after that, I’ll have one less thing to stress about while I stress about all the other things I have to do.


These entries are inspired by Thord D. Hedengren

065 // Gah!

Why, oh why, does the United States health care system have to be so damn complicated!

The IBD nurse called to schedule a time for a phone appointment with my Gastroenterologist tomorrow. I’m positive she wants to yell at me for not getting my shit together and taking too long to enroll in the financial assistance program through the drug company so I can start my new medication.

The thing is, I actually had my shit together this time…mostly. I was only dragging my feet for like, a week! The rest of the time I was waiting for the cost analysis from the insurance company, then trying to figure out which financial assistance program to apply for, then reapplying after I applied for the wrong one, then having them explain to me that the one I am approved for is a special one that is extra complicated for no reason other than because I have my insurance provider likes to make things complicated, then, after I was finally approved, having them try to explain to me how it works, twice!

Now I’m enrolled in a program I barely understand and still cannot use for another 7 to 10 business days while a wait for a welcome packet in the mail and somehow, it’s my fault this is taking so long?

And that is just the tip of the healthcare iceberg. Choosing an insurance provider in the first place was complicated. Getting a diagnosis was complicated. All the blood tests and side effects are complicated. Keeping myself well is complicated. Choosing, starting, and switching medications is complicated. It shouldn’t be this damn complicated!

All this, I am convinced, is only further complicating the condition all this complication I am going through is supposed to treat!


These entries are inspired by Thord D. Hedengren

034 // Growing Old While Young

Ending the night in pain. The joint that connects my middle finger to my palm has swollen and the joints in my feet are protesting against my weight.

I’ve taken ibuprofen even though I know I’m not supposed to because it’s the only thing that helps. I’ve got two heating pads going and I’ve put myself to bed early hoping to wake up in a better state.

I’m doing my best to stay strong because know I’m only going to get worse while I wait for financial assistance from the new drug company. I’ve got my fingers crossed for that phone call sometime this week.

Damn, it’s depressing to grow old while you’re still so young.


These entries are inspired by the journal posts of Thord D. Hedengren

006//365

Now that the living room revamp is done, and I’ve caught up somewhat on the housework, it’s time to focus once again on our upcoming wedding. We’re reconsidering all-inclusive packages and trimming the guest list down to whatever number it needs to be to keep our preferred venue options available. We’re procrastinators, as I’ve mentioned, and we loathe wedding planning, so we’ve got to make things easier on ourselves if we want to get this done.

By the end of the month, we will have a venue and date chosen and booked!


These entries are inspired by the journal posts of Thord D. Hedengren

005//365

Why do I have such a hard time seeing past what is difficult or scary to all the great things I can have or experience if I would only get up, face my life, and do the work? Why must I procrastinate so damn much?

The living room revamp project is nearly complete. All that’s left is small wall touch-ups and then we can finally put everything, the T.V. the couch, the record player, and the animal’s beds back in its place. The paint looks amazing and I wish we’d done this years ago instead of whining and stalling because it was hard and scary.

Day 5 of Dry January has been the hardest so far. We—my girlfriend, is joining me in this challenge too—realized we have been replacing alcohol with food. At the end of the day, when we would normally share a hard cider between us we’ve been opting instead for pizza, hot wings, and tacos. To be fair, we’ve also cut back in sugar and our bodies are obviously having a hard time coping.

The first step is admitting you have a problem, right?


These entries are inspired by the journal posts of Thord D. Hedengren