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

086 // It Could Be Worse

I was finally able, after weeks of back and forth with my doctor, my insurance provider, the pharmacy, and the drug company, to get my medication and now I find myself almost too afraid to take it! They really should try to find gentler wording to use in those warning packets they give you the first time, you know?

I wish I felt comfortable enough to share the outrageous cost of the medication here but I will tell you that after ringing up the bottle the pharmacist simply started at the screen with a look that was equal parts confused and astounded.

He wouldn’t even speak and only after I told him he was worrying me and asked him to please explain the look on my face did he ask me what I normally paid for the medication. I told him that whatever the cost I wasn’t the one paying; it was the drug company, and he sighed relief on my behalf. When the price came up on the card reader, I understood his shock. Even if it wasn’t my money, it hurt a little to swipe that card.

No matter what I go through in this shit show of a healthcare system I am constantly reminded that it could be worse. I could have had to pay that price tag with my own money, and in all honestly, that price would have been many times larger if I didn’t have insurance at all.

I’m frustrated for me but I’m wholeheartedly sorry for those worse off. I hope change comes soon and we all get relief from this cruel and unnecessary bureaucracy.

These entries are inspired by Thord D. Hedengren

076 // A Body That Won’t Cooperate

I’m feeling awful today. My head, my stomach, my whole body! And I’m so tired. I got nothing done and now I’ll have to spend tomorrow trying to redo today.

I guess that’s not so bad, as long as I actually feel better. Either way, I will do my best and then I’ll do just a bit more. I want to hit the ground running this week and get some shit done this week. I don’t have time for this chronic illness crap. It’s so frustrating to be inside of a body that can’t, or won’t, cooperate.

These entries are inspired by Thord D. Hedengren

074 // I’m Still Waiting

I was supposed to begin my new medication today but there were more complications at the pharmacy. Now, even though my doctor has ordered the medication and even though I have already done a cost analysis, the benefits department still has to take one more look just to make sure that, I dunno, they still want to pay for it or whatever.

I sat in the waiting area for half an hour only to be told it would be at least a few hours more. They would call me theytsaid. So, I left the pharmacy nearly in years and went back to work to wait anxiously by my phone and got no phone call at all. Now, I’m still waiting, still frustrated, still not on medication, and seriously considering changing course and going back to infusion medications for which financial support has been easier to navigate.

My night wasn’t much better. I made a grave scheduling mistake and we ended up driving across town for an event that doesn’t take place for another week. So, to help cope with my embarrassment and guilt I proceeded to overstuff myself with a double cheeseburger and a bag full of cajun fries for dinner. Afterward, we snuggled in on the couch and watched trashy TV dramas until I felt calm enough to put the day firmly behind me and head to bed.

Tomorrow has to be better.

P.S. I want to take a moment to acknowledge that this is my 100th post here and to say that while I have only just begun to work out what kind of space, this is it has already been an immense joy to have. Too much in fact, I’m afraid. It’s been a complete distraction as well and while I know eventually I’ll have to venture out from the warm comforting glow of this new place, I’m happy for now just to explore, to tweak, to write my foolish words, and to be ignored. Thank you all for reading.

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

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

If We Were Having Coffee // Nothing is Inconsequential

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

The sun is up and out and all reports promise temperatures near 60. It’s concerning to have such warmth in winter but I’m so ready for all this snow and ice to finally start melting. I’ve got all the windows cracked hoping to cleanse my soul with the crisp clean air. Perhaps Punxsutawney Phil was right, Spring does feel awfully close today.

So, pull up a chair and help yourself to a cup. I’m craving a bulletproof egg latte myself but for the less adventurous I have the usual cold brew and the Moka pot is always on if you want something warm. Let’s talk about last week!

“My cup is full of air. I should empty it and fill it with love. Or coffee, as the two are synonymous to me.”

— Jarod Kintz, This Book is Not for Sale

If we were having coffee, I would tell you that this past week felt very long. Our weather was all over the place again. We started the week with snow and freezing temperatures and ended with sunshine and ended nearly 15 degrees above average.

Despite the rising temperatures many of our streets are still covered in think layers of ice. Weeks like this are hard when you work in a school bus. Traffic was awful and accidents were happening everywhere. We ran very late and had more than a couple of close calls. It was frustrating but in the end, I was just glad we made it to and from safely.

In addition to that stress, I spent much of the week especially exhausted. Between my girlfriend’s lingering cold and cough and my anxiety, I haven’t had a good night’s sleep in over a week now. I’m coping well though, considering. Extra coffee and afternoon cat naps have certainly helped. I’m hoping the new workout routine I’m starting today will help too.

I’m debating talking to my doctor about trying medication to help mitigate my anxiety. I can see that my old coping mechanisms aren’t working as well and I feel myself slowly losing control of my body and my thoughts. I’m tense. I’m irritable. I’m getting “stuck” more often on small inconveniences and any amount of change has become terrifying. Nothing is inconsequential anymore. Nothing is insignificant. Nothing is okay!

I’m overwhelmed and I need help but asking for it isn’t easy.

If we were having coffee, I would tell you that my resolutions this year are being implemented in stages. My plan is to take some time at the beginning of every month to reassess my goals and decide what I need to start doing as well as what I want to stop doing. I never want to be working toward what I used to want, you know?

Last month’s resolutions included not drinking alcohol and cutting back on my sugar intake, as well as writing, reading, and doing my Spanish lessons on Duolingo every day. I did well on all fronts though cutting out sugar proved the most difficult. The stuff is in everything!

As for this month, today I’m starting a beginner bodyweight fitness workout, a few days ago I enrolled in a Coursera online course, Social Norms, Social Change I to kick off my resolution to always be taking a free online course. Besides those two resolutions I’m resolving to post weekly on Zen and Pi again, and by mid-month, my weekly-ish newsletter will, hopefully, return.

If we were having coffee, I would tell you that I’m working on a proper post to wrap up Dry January but I want to quickly say that, for me, the difference between a moderate alcohol habit and drinking no alcohol at all was not drastically different. I lost a few pounds but that could have just as easily been a result of lowered sugar intake.

I’m working on a proper post to wrap up Dry January but I want to quickly say that, for me, the difference between a moderate alcohol habit and drinking no alcohol at all was not drastically different. I lost a few pounds but that could have just as easily been a result of lowered sugar intake.

I didn’t sign up for the Dry January challenge because I had an unhealthy relationship with alcohol, but because the medication I’m on is affecting my liver to such a degree that a relaxing glass of wine after work would impact my system much more than it would other people.

Unfortunately, after an ultrasound and further blood tests this week, my doctor has determined that I suffer from a mild case of “non-alcoholic fatty liver disease”. I’m of the belief it is yet another long-term side effect of steroid use after my initial diagnosis of ulcerative colitis, but there is no way to know for sure. In any case, I’m being advised to continue to severely limit or abstain entirely from alcohol.

So, my little experiment will become a long-term habit change and to be honest, I’m a little sad about that. I don’t feel reliant on alcohol but I have always enjoyed it. It seems a small thing but I enjoyed alcohol the way other people enjoy new and exotic foods. For some people, cooking food, experimenting with food, sharing food, and learning about food is a big part of their lives. I enjoy trying new drinks and playing bartender for family and friends. I enjoy pairing wines with meals and knowing just what kinds to recommend to others who are less experienced or knowledgeable.

Going forward that will have to change, and I will have to change too.

If we were having coffee, I would tell you that it’s Super Bowl Sunday here in the states, a sporting event turned unofficial national holiday but here at home not much fanfare is being made. One of the things that has kept my relationship together is our mutual disinterest (and oftentimes disdain) for the cult of football. We’ll watch because the commercials are awesome, but the outcome won’t mean much to me either way.

Instead, we’re spending the day cleaning the house, relaxing, and making more wedding plans.

Yesterday we looked at yet another venue but this time everything felt different. We fell in love with the place the moment we walked in. It’s intimate, urban, located in the heart of the city and most importantly, it feels like us. It isn’t the outdoor location I originally envisioned, but it’s not far from an outdoor ceremony location we’d considered previously. And, in the case of inclement weather, this place can accommodate saying our vows indoors. It’s as close to perfect as I can afford.

This week we’ll put down the deposit and lock in our date—which was miraculously still available!—and start chipping away at the seemingly endless list of decisions and to-do’s leading up to our big day.

If we were having coffee, I would tell you that the sunlight is coming in low through the west windows and the air coming in is chilling fast. It’s time to start dinner and to turn the game on. I may not care about the outcome but to not watch feels like too great a transgression against societal norms.

I hope you had a good week. I hope you accomplished something and if you didn’t I hope you know you can begin again tomorrow. I hope whoever you are rooting for tonight wins and that you celebrate safely tonight.

Until next time.

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

Photo by Nathan Dumlao on Unsplash

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