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

052 // Troubling Signs

I’ve been feeling good lately, physically at least. The longer I am off my old infusion medication the better I feel too. I’ve lost weight. I’m happier, more motivated, and enjoying the random bursts of enthusiasm I have for people again. I feel good, but there are troubling signs too. I’m afraid without the infusions to control my ulcerative colitis plus all the stress I’ve been dealing with, a flare is imminent.

It figures that when my symptoms are under control the rest of my body would feel like crap, and when I get my gut under control, then the rest of my feels cruddy. Sigh.


Tonight we secured the wedding venue and our date, and we settled on wedding invitations too. Three decisions down, about a thousand more to go. I am finally feeling more excited, but I’m also feeling a lot more anxious and doubtful. I can’t shake the fear that we are now locked into something over our heads and financially foolish. I can’t help doubting we can pull it off or that any of this will be worth it or as wonderful as we dream.

I just try to remember that at the end of all this I will be married and that, more than any of those thousand little decisions I’ll have to make until then, is what matters most.


These entries are inspired by the journal posts of 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

029 // Tonight, I’m a Mess

I can’t believe we’re not even halfway through the week yet, and this godforsaken month seems determined not to end. Why don’t the weeks of April through October ever feel this long? I suppose times slows to a crawl when you’re miserable.

I spent most of the day dealing with medical professionals, staff, and drug companies. There was good news, or, rather, there was information which did help put my mind at ease. But, moving forward with new treatment means a battery of new tests and appointments and it also means more anxiety. I’m trying my best here but it’s hard.

So, tonight I came home, claimed a corner of the couch as my own, wrapped myself in my comfiest blanket, and let my girlfriend know that is where she could find me for the rest of the night. Tomorrow I’ll be strong again, but tonight I’m a mess, and that’s okay.


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

025 // Bad News Day

It’s a lot to get into, but some news I had been dreading to receive, news I had just begun to hope wouldn’t come after all, came today. Long story short, my medication is damaging my liver and even though it is keeping the inflammation in my colon at bay, I will have have to cease taking it and start something new.

If you live in America and you have a chronic illness you’ll have some idea how stressful it is to deal with insurance companies during treatment changes. First, there must be a cost analysis done to find out if, and how much of the cost they will cover. This medication will more than likely cost thousands of dollars a dose, the same as my last medication. How much my insurance will cover and how much I can get assistance for the rest will take time to work out and there is a possibility that it won’t.

In the meantime, I a ball of stress and anxiety, a state that actually triggers and worsens my symptoms. What if we can’t afford the new medication? What if I am allergic to the new medication? What if the new medication doesn’t work? What if, while I’m waiting for the cost analysis and the financial assistance, my symptoms return or worsen? What if, what if, what if…?

Of course, worrying does nothing, and like all things, I just have to wait for answers to come and deal with them as they do.

But that is easier said than done.


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

If We Were Having Coffee // One Last Busy Week

Hello dear readers! Happy Sunday and welcome. Thank you for stopping by for a bit of caffeine and catching up.

I got up late this morning, but I made coffee the first priority this morning so I’m moving fast. I sure wish I had a good espresso machine, or even a little Moka pot, though. This cold brew is good and strong, but I need more “on demand” options for these higher caffeine concentrations. There’s a lot to do around the house today. Cleaning, laundry, and dishes mostly, and in between, some writing in too, obviously. I was too tired for any of it yesterday and feel the need to do double the work today, after chatting with you.

So, pull up a chair and fill up a cup. The sun is shining, and the air is warm again today. We’ve been 10-15 degrees above average temperatures for weeks now. It was nice at first but it’s beginning to worry me a little. Still, best to make the best of it right? Best to throw the windows open, let the fresh air is blow through, and take full advantage of these perfect conditions for some good conversation I think. Let’s talk about last week!

“Whenever I drink coffee I love being alive.”

creamysmooth

If we were having coffee, I would tell you that last week was exhausting!

Part of my job, when not riding the school bus with the students, is teaching other people how to ride the school bus with the students. We had a new class of employees start and it was a bigger class than I’ve taught in a long time. I was out of practice and off my game at the start. I injured myself twice and struggled to stay positive and motivated, but I got through it. I hear there will be more of the same in the coming week too. This time I’ll be ready.

I spent the weekend healing a pulled muscle, some sore joints, and a couple of deep cuts on my hands. I rested, ate well, drank plenty of water, and rested some more. I got out of the house. I saw some friends for a “pancake cook-off” and a couple of strong mimosas. I did a bit of window shopping and got some projects done around the house too. It was a good weekend and I feel physically and emotionally ready for the next 5 days of dark mornings, long days, and early nights.


If we were having coffee, I would tell you that last Tuesday was “infusion day”, the day every 8 weeks where I hang out at the clinic and get my ulcerative colitis medication through an IV drip. Because I had been tolerating the infusion process so well the nurses and I decided to start doing them a little faster so I can get the heck out of that place as soon as possible.

Not that it’s awful, especially if my girlfriend stays, and if I have a good book and plenty of snacks, but being there makes me feel like a sick person and when I leave, no matter how I actually feel, I’m well and normal again. 

The one-hour infusion went well but there was some bad news too; I think. Before every infusion, I have to get blood work done. Two months ago my liver panel came back with some concerning numbers and looking at the results from Tuesday things are looking even worse. I expect—hope!—to get a call from my doctor this week letting me know if it really is bad news, or if we will continue to “keep an eye on it”.

Either way, I am sure she will tell me not to worry, she always does, but I know that if my liver continues to be damaged by this medication, I may not be able to take it anymore. There is a chance of getting sick again while we try something else, and greater and greater financial burdens too. 


If we were having coffee, I would tell you I have failed completely to do any of my Christmas shopping before the deadline I had set for myself, or before it would be too late to ship them. I just keep forgetting that it’s the holiday season at all. I don’t have my tree up or any Christmas lights either, plus, like I said, the weather has been beautiful and having no kids of my own the holidays simply slip my mind sometimes.

This is my last week to get it done though. I know Christmas isn’t all about the gifts, but it’s kind of all about the gifts. I’ll have to do the shopping every day after work when the sun has already gone down and I’m already tired. Knowing me, I won’t make it and those gifts are going to end up arriving at their intended destinations and recipients very late. I hope everyone is feeling rather patient and grateful this year.


If we were having coffee, I would tell you that one of the many perks of working for a school district is getting to end the year, and begin a new one, with a nice long rest. This coming week, though it will be busy, will be the last busy one for a good long while. Schools will close, and buses will stop running until the second week of 2019. I’m so looking forward to resting my body and mind and having time to prepare for the new year and to reflect on the last. 

Of course, this long break it isn’t great for the paychecks, so I’m not taking all the time off offered. I’ll go in for at least half of the break—along with the rest of my team—to check our buses and make sure each bus is stocked with supplies and set up in accordance with policy and law. It will be easy-peasy work. Half days and half or less of the stress and I get to put my headphone in, listen to podcasts, walk around in the sun, and take all the breaks I need.


If we were having coffee, I would tell you that it’s getting dark outside. The sun is coming in low through the west windows and that means it time to switch from coffee to tea—and later, wine—else risk fueling my anxiety late into the night, and speaking of anxiety, I’d better get a move on and finish up these work week preparations, else risk a light night wide awake with worry.

I hope you had a good week. I hope that you are excited for the fast approaching holidays, not stressed or depressed. Do not forget to make time for you and to reflect and remind those around you occasionally what the true meaning of the season should be. Do not forget to show love and look always for ways to be kinder.

Until next time.


Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli.

Photo by Annie Spratt on Unsplash

If We Were Having Coffee // The New Year Begins Now

Hello dear readers! Happy Sunday and welcome. Thank you for stopping by for a bit of caffeine and catching up.

I’m moving slowly this morning. I’m ambling about unfocused, scattered, and distracted. My schedule was thrown off by the cancellation of a group brunch this morning and now I don’t know what to do with myself. I did all the cleaning yesterday (thinking I wouldn’t have time) and writing—the thing I know I should be doing—is proving too difficult to be enjoyable. I’ve just now been able to pull myself away from my phone, and I’m hoping a cup of coffee and some good conversation can motivate me to get back on track before the day is done.

So, pull up a chair and fill up a cup. The sun is shining today and the temps are warm enough to open a few windows and let some crisp air in. Let’s talk about last week.


“The best Maxim I know in this life is, to drink your Coffee when you can, and when You cannot, to be easy without it.”

Jonathan Swift

If we were having coffee, I would tell you that last week was another long one. It’s hard going into work when it’s dark and coming home, cold and exhausted when it’s gotten dark again. This is usually when I start feeling depressed. It’s like the world stopped existing and all there that’s left is work and home. I feel trapped, but knowing there is nothing I can do I simply resign myself to it. Winter is forever…

This year I’m trying not to let myself get too down. This year I’m trying to get out more, with friends if possible but even a walk around the parking lot at work during lunch will do. I have to remind myself that the world is still out there and that I can still do things, go places and be happy, even in these cold and dark times. 

I actually made all kinds of plans this weekend. We had the above-mentioned brunch and a birthday/Christmas party to attend too, both of which were canceled. Part of me is disappointed. I probably won’t have the time or the energy to get out again until next weekend, but part of me is relieved. The part that wanted to wallow on the couch, binge watch The Walking Dead and sleep way too much, that part of me won this weekend. I’m realizing now that, as usual, her promises renewed energy after so much “rest” have proven hollow.


If we were having coffee, I would tell you, honestly, that I didn’t accomplish much this week, but it’s ok, my priorities were a little different. I spent much of the week brainstorming ideas, reading, and practicing doing nothing at all. 

I’m about halfway through The Iliad now and on track to finish by the end of the month. That is my last reading goal of the year and I am determined not to fail this one too. I keep feeling tempted to pick up something else but I’ve set my expectations so low (just 10 pages a day) that there is no excuse, and at the end of the day when I read for 30 minutes before bed, if I still want to pick up something else, I have Emily Dickinson’s poems waiting on the nightstand.


If we were having coffee, I would tell you that when I wasn’t reading I worked hard to avoid social media and instead worked on some ideas and strategies for next year’s goals. I’ve always believed that the time to start your new year’s resolutions is the December before. I want to hit the ground running on January 1st; you know? 

I’ve got my new body weight fitness routine just about figured out. I had to make a few modifications since I don’t have a lot of equipment and I have chronic joint pain. I still have to clear out the basement bedroom and convert it to my basic home gym but all that requires is a Saturday morning’s worth of cleaning, carting the old TV down there, and picking up a new area rug. 

I’ve also downloaded the Year Compass booklet to fill out this week. I was looking for a way to take stock of where I am and start planning for the year to come. I filled one out last year but I can’t for the life of me remember what I did with it. This year’s I’m going to keep in the back of my journal, and the next one too, and I’ll leave it in the last journal I use for the year before filling out another. 

I’ve also downloaded the new daily goal tracker from Elise Joy to use for a new year-long creative habit. I have been trying to work up the courage to start using my the art journal I made last summer, but for some reason, I just can’t bring myself to sully those beautiful, pure blank pages. Perfectionism and a fear of looking silly are keeping me from starting but I will not let another year go by while those pages stay blank. I’m going to start, and I’m giving myself permission to keep those silly drawing all to myself if it helps.


If we were having coffee, I would tell you I have a very busy week coming up. I had planned to take it easy but much of what my week look likes is, unfortunately, out of my control. We’ve got a lot going on at work, and there have been hints we may have a lot going on for a while. 

I’m going to take it easy as much as I can though. It’s “infusion week” this week. For those new to my story, two years ago I was diagnosed with ulcerative colitis and my current treatment plan includes drip infusions of my medication every 8 weeks. That means every other month I spend the afternoon in an infusion center eating snacks and reading while a nurse makes sure I don’t have any adverse reactions.

After these infusions, I’m always exhausted. I think part of it is being anxious the whole time, and the fluids they give me make me feel cold and tense too. A nurse once told me dropping all the medication into the body at once contributes to the tired feeling too. I always take it easy during my infusion weeks. I figure it’s my body’s best chance to calm the immune system and give the medication a chance to work.


If we were having coffee, I would tell you that the sun is getting low now and I’ve finally found that energy I needed all day. I’d love to stay and chat through the evening too but if I don’t start preparing for the week ahead I know I’ll regret it. 

I hope you had a good week and that wherever you are winter isn’t rearing its ugly head. I hope you got out and made time for you. If not, there is still time and I urge you to spend it doing something that will make you feel good or at least a little more ready this coming week.

Until next time.


Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli.

Photo by Trent Erwin on Unsplash