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

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

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

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