Well it’s night shift reporting for duty again. I had finally gotten my sleep schedule back on track and then had a gout flare up this past weekend which requires high dose steroids and then a taper. The high doses keep me wide awake at night, so I’m back to being on night shift again.

Seems like we can’t win right now….i had two trips to the ER last week in the middle of the night. We will call them “episodes”. I would suddenly get really sweaty, palpitations, chest tightness and nausea/vomiting. For the first time post transplant I took nitroglycerin sublingually to hopefully get rid of the pain. When that didn’t work, off to the ER we went.

They tried to admit me locally, until a bed opened at Hopkins the first time. The hospitalist was refusing due to the complexity of my case, cardiology was saying they were fine with it, the hospitalist was not listening nor willing to work with Hopkins team, so I said just let me go home. I had to sign out AMA or against medical advice, even though in the records it flat out states the hospitalist refusing to admit me. This isn’t the first time this crap has gone on. I have full confidence in the local ER docs, but the hospitalists scare me. I have 24/7/365 pager access to my transplant coordinators, so I felt safer leaving a hospital than staying. Go figure.

I had another episode last Friday so back I went at 5am. That ER doc was less than stellar, basically ran the blood work and said good luck. I was supposed to see the transplant team this week, but the snow cancelled all my appts, so we are trying again next week.

And then on Friday, my stomach also decided it wanted to be a part of the party and I’ve been on a liquid/soft food diet since then. We don’t even know what’s going on there.

And then Saturday I woke up with gout in my foot and couldn’t bear weight on it, so I’ve been stuck in bed for 5 days while the prednisone does the trick. Thankfully, Mom works from home a lot so she’s able to help me get up to the bathroom, etc.

And the past two days I’ve been dealing with a migraine, because the steroids cause high blood sugars which can cause migraines. So like, it seems like I can’t win this week.

When I want to voice my frustrations but don’t want to use profane language, I declare “Fritos and frijoles”. A gem from my youth ministry days, that one of the kids used to say..”Fritos and beans”. It allows me to voice the emotion and then it makes me laugh.

There was a lot of Fritos and frijoles, this week. I had to literally put a Hope background on my phone to remind myself, that this too shall pass. It might pass like a kidney stone, but it will pass. Did the phone background work all week? Nope. I threw that phone in the bed a few times.

It’s hard to live with chronic illness and repeat disappointment on how I thought I was going to feel or how the day is going to go. Especially when it’s a week of back to back issues.

Disappointment is a hard thing to swallow… I think that’s true for a lot of people..The disappointment of a friend ghosting you, or a test result that wasn’t what you expected, or even the conversation that took a hard turn in the wrong direction. Or the person that just won’t change.

But I watched a video (i can’t find it now), this week about this woman who had gone through a season of disappointment and she was a little feisty in her relationship with the Lord, kinda like me. It took her a long time but now in moments of disappointment, she mutters a quick prayer of “God, you must be up to something”. And she would do so in hope for the future and faith in His plans.

I so hope for better days ahead, but on the days of flares, headaches and “episodes”, I will choose to trust that “God is up to something”. That is when hope wins.