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LIFE – This was the one-word prompt provided for the Five Minute Friday link-up a couple of weeks ago. LIFE got in the way and prevented me from turning in my homework on time. But our LIFE has been a bit crazy these past 6 weeks, and I wanted a chance to unload my brain a bit.

The dominos fell slowly. Camp Fradd came down with the flu just after Christmas. Jay got sick on Friday, by Sunday he had given it to me. For Jay, pneumonia followed closely behind.

I don’t want to list Jay’s medical chart, but the month of January has been one of doctors’ appointments, ER visits, and new medications. Medicine prescribed for pneumonia caused GI bleeding, followed by a renal infarction,* and ending (we hope) with high blood pressure.

*To simplify it as much as possible, his kidney had a stroke.

The first ER visit came on a Thursday morning. He assumed his pain stemmed from a pulled muscle (and a subsequent bleed thanks to his hemophilia). With his hematologist out of the country, the office recommended we go to the ER. We left the ER with a misdiagnosis of gastritis. The GI bleed distracted from the bigger issue with his kidneys. Rather than getting better on the medicines prescribed, his pain grew worse.

Saturday night he moaned and groaned in pain like a woman in labor. So, of course, my coping mechanism of inappropriate jokes kicked in, and I said he’d gotten his first period. Neither of us slept much that night, and he continued to get worse on Sunday.

Knowing I would have to return to work on Monday, I decided to take Benadryl to help me sleep Sunday night. At 10 PM I took a whole pill (normally I take a 1/2 or a kids dose), then went to bed. At 12:30 AM, he woke me up asking to go to the emergency room.

We’ll skip my less than graceful reaction. Just know that I’m winning wife of the year.

While the timing sucked, he received his proper diagnosis during that trip to the ER. Despite going straight back into a room (unheard of for that particular ER), we did a lot of waiting that day. His hemophilia complicates his other medical treatments. Several times between 2 AM and @ 2 PM we heard “Normally we would do X, but I’m not sure that would be best for him.”

We were discharged the next day with a new medication but found ourselves back in the ER the following week. They explained that his high blood pressure was his body trying to find homeostasis with the kidney issue. BUT he needs a little help via pharmaceuticals until his body gets with the program.

Wife of the year begged to be able to rip these off, but he chose to do it himself. His hairiness caused much needed delirious laughter during our visit.

This week begins the doctors’ appointments – finding a new primary care doctor that we can trust, following up with both the vascular and hematology specialists.

This illness has not only affected how we started the new year, but will be joining us for the next few months and well into the summer. My hemophiliac will have to remain on anti-platelet medication (not quite blood-thinning but still worrisome) for the next 3-6 months to ensure his kidney heals  properly and doesn’t infarct again. (Not an actual medical thing, but I barely understand. Certainly not well enough to articulate it in writing.)

I’m proud of how diligent he’s been at monitoring his blood pressure and recording it in a “at home patient log” I created in his spiral work notebook.

I’m struggling to find gratitude where I can. “This year” is the phrase I’m hanging on to. This year he had an infarction. This year our lives are unsettled.  

I’m grateful:

  • We had an advocate who understood our situation and fought for us.
  • Our family and friends are the best – we were never alone.
  • Hiking in the Alps is only delayed, not canceled.
Finally, a break in the clouds.

I’ve said lots of “we” and “our,” but it’s true that only one of us was ill (beyond the flu). But when the person you love most has a serious condition, it affects both of you.

One of you experiences the limitations of the pain, but you both feel the fear.

Both of you endure sleepless nights.
Both of you focus your time and attention on treatment.
Both of you are zapped of energy, but for different reasons.

LIFE is unpredictable.

LIFE is short.

My goal for 2020 has been to live it well. Given the changes over the past few weeks, that goal looks just a bit differently now.