222 // A Miracle Morning

I woke up to a miracle this morning. For the first time in months, I woke up feeling somewhat…normal. My body was, for once, cooperating, functioning, not in pain, not in distress. It seems I may have, or, I hope I have, turned a corner in my healing. I just not entirely sure how or why it’s happened. My gut tells me—no pun intended—there was no one cause but finally everything I’d been desperately trying finally coming together.

I’d been taking my medications and supplements religiously. I’d been meditating day and night. I’d been hydrating continuously and practicing intermittent fasting. I’d been resting and doing things I enjoy. Then last night, I switched for just one meal to a low-residue diet and I think this, coupled with pure coincidence, was the last puzzle piece I needed.

My wife went off to work, so I spent my day and this new found energy doing a few of my favorite things: cleaning, collaging, drinking coffee, and catching up on the Science of Well-Being course. I did my best not to think about tomorrow, and for the most part I succeeded in simply being.

That isn’t to say today was a perfect day. I did have a migraine that would not subside without harsh medication, caffeine, complete darkness, and sleep sounds courtesy of the Headspace app. An hour like that fixed me right up and the rest of the day rolled on.

And now the day, for good or bad, is coming to a close. The sun is streaming through the western windows, bringing blistering heat that leaves me feeling heavy, suffocated, lazy, touchy. I anticipate the joys and trials of the day will fade into an uncomfortable eagerness to end the weekend and get on with what the work week will throw at me. I’ve had enough of rest. I’m ready to begin.

215 // This Is Not Optimism

Another bad night and another bad morning to follow. After a night up with pain and down with worry and low self-esteem, I’m tired beyond words today.

I started by trying to fight the fatigue. I got out for a short walk with the dog and made grand plans to clean the house and get some much missed writing time in but I lost the battle quickly to naps that were only interrupted long enough to eat and apologize to my wife before falling asleep again. The rest did me good, though. By early evening I felt part of the living world again and managed to mark one or two check marks of my to-do list.

I’ve already decided to stay home tomorrow. I already know that I’m not ready yet to return to work. I’m taking my medication, staying hydrated, and meditating to manage symptoms, but I’ve just gotten so bad that recovery will take more time and patience than ever before.

In addition to take I’m doing my best to stay optimistic, but like everything else, it’s harder some days than others. Sometimes I wonder what the value is in optimism at all. It feels like nothing but another kind of pressure, another expectation I can’t meet. I don’t want to be optimistic. I want to be realistic. I want to be angry. I want to be sad. I want to be negative and nihilistic.

But that isn’t me, or, it isn’t all of me. I’m angry, but I’m more than this anger. I’m sad but there is more to life than this sadness. I’m in pain but outside of this pain there is still beauty, love, and life.

When you have a chronic illness time moves slower. A few weeks of flare up can begin to feel like your whole life. The pain and pessimism become all you can feel, see, and think about. This low quality of life stretches out behind you and in front until no way out can be imagined. Memory of healthier times and the hope of healthier times to come fade.

I know this is a lie. I know that this struggle is as temporary as every other struggle I have overcome before. Soon, one way or another, things will get better. I will get better. This is not optimism, this is truth. This is being realistic. This is no expectation or pressure. This is an inevitability.

214 // A Brief Normalcy

Today is a better day. I’m feeling more solid, physically, more present and connected to my body, stronger. This is always the first sign of healing. Before I can see tangible improvement, before I can see or feel exactly what and where I have begun to heal, I feel it in my spirit. A corner has been turned, but I know that doesn’t mean that the journey won’t be agonizingly slow and that setbacks are not on the horizon.

And so, because I was feeling a little better and because I have been feeling so down, I decided to venture out with my wife for some shopping therapy. The weather was gorgeous and having a few new things for the home made a big difference in my mood.

Of course there were tough moments. This ulcerative colitis flare has progressed so far that I’m left with a great amount of fatigue, pain, discomfort, and anxiety almost all of the time. There were moments today between all the positivity and the hopefulness, when I wanted to break down, but I breathed through it. I sat with my pain and fear and fatigue and I gave it space to breathe too and each moved to let me pass for a time and I am grateful for the brief feeling of normalcy.

Unfortunately, the outing was still just slightly little more than I could handle and when I got home, I crawled right back into the bed to recover.

The evening is settling in now. We have some rain clouds cruising in from the mountains, but they don’t appear too threatening. I’m looking forward to a calming and cleansing rain. Much of my cleaning was done last night and I’m basking in the peace of knowing I have nothing I have to do and nothing anyone is asking of me. I may write for a while or work cut and compile a new collage piece.

Or maybe I won’t push myself to make, or read, or write anything at all. Maybe I’ll give myself permission to just lay on this couch, watch some mindless TV, and enjoy a couple of glasses of wine with my wife before turning in early. I deserve it. I need it.

140//366

It’s infusion day, again. This one is a little more special. It’s the last of what they call the “loading doses”. After this I go on a more regular schedule of every eight weeks, as long as all the tests they did at the lab beforehand come out stable that is. We still have to see if the drug levels are where they should be and if my white blood cell counts and a few other things are where they should be.

I’m still dealing with some questionable and slowly worsening symptoms, but I’m in contact with my healthcare team and no alarm bells are going off yet. A few more tests have been ordered and I am being asked to hold off on lower the dosage of any of the medication I am currently taking which is a real bummer. I was looking forward to at least one less pill a day for a while.

The center is still a lot quieter than usual. I think non-essential procedures are still being postponed. It was nice to be to be out of the “broom closet” private infusion room and back into the open area with the big bright windows again but the nurse warned me that next time I may not be so lucky.

I know other people need these spaces, but it bothers me that because my infusions are shorter; I have to be shut into a windowless room and every time I bring it up t the staff I’m brushed off. I don’t think they understand that it’s depressing to be there no matter what your condition or how long your infusion takes. I should at least get to see the sun while I’m there.

086//366

It feels like it’s been months rather than weeks since I last had to get up and get anywhere on time. Today is my infusion appointment. My third out of the first four they call the “loading doses”. Getting out of bed and then getting ready was difficult. I’m just not used to it anymore but at least we were able to leave the house a bit later this morning knowing that there would be minimal traffic on the roads.

I’m hear now and about halfway through the bag of medication. I’m not in the small windowless and cramped room they had previously shoved quick infusion patients like me into. No, I’m back out in the big open room, but it’s not as cheery as usual.

The blinds are drawn and there is no sun or mountain views from my comfy recliner, and the place nearly empty. The nurse working with me explained that most infusions have been cancelled to reduce spread of the virus. Only chemotherapy, inflammatory bowel, and other patience who are relying on this place to keep them at optimal health are allowed in now. I’m ashamed that made me feel important.

I hope by the time I come back at the end of May things will be a little more like normal again and though that means I’ll most likely be back in what my wife calls the “broom closet” for my infusion I need the sun and the people, the smiles and cheer. This place, though by definition is a sad one, has paradoxically always been a source of encouragement to me.

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