Back to Zero

Ed joked that we need a board around the house that says “x amount of days without an ER trip” instead of one that says “x amount of days without a workplace accident.” I was pretty proud of myself for staying out of the ER since July. In June and July we did 5 or was it 6? ER trips in ONE week.

This time I was in excruciating pain, and peeing blood so I knew forcing myself to go to the ER was warranted, although I never want to go and try to talk myself out of it every single time.

This time I ended up with a kidney infection and pneumonia, antibiotics, pain meds, fluids… and in the end still had to increase my prednisone, once again, from the 17mg I had finally weaned to, back to 40, as the two infections were causing havoc and also threw me into an IBD flare. So a lot of bleeding, no breathing. It was my only option. It broke my heart.

But it helped within 3 days despite the fact my head feels like it’s going to explode, I’m hyper, swollen, and my eyes feel like I want to pop them out of my head with spoons to relieve the pressure. I know the crash that’s coming when I drop dramatically too. But because of so many infections I also had to skip my double injection of Humira this week – it’s not really been helping my gut but my joints feel amazing and I haven’t even worn my braces in weeks.

But here I am again, hoping to stay out of the ER a bit longer this time. My nurse, whom I see every time and has Crohn’s disease says hey, just look at the time you stayed away, that’s the victory, don’t look at the loss… and she’s right.

And I’m lucky to have a boyfriend that gets up at 4 AM to drive me to the ER and sit with me, and support me even though he’s tired and stressed himself. It’s not easy being on this rollercoaster with me, but he insists, no matter how many times I’ve tried to let him get off of it.

The antibiotics and prednisone are working. It’s going to be rough coming back down and I’m exhausted and hyper all at once thanks to the prednisone, but I’m just glad I’m not loosing a lot of blood anymore and my lungs are clearning, which means, hopefully I am out of danger.

I have a lot to stick around for, and I’m trying my best to do so. One day at a time. One set of challenges at a time.

I’m tired of resting and netflix. I’m unable to read because of my eye pain thanks to the prednisone and Sjogrens. so I’ve been limited in my activities, but hopefully if things keep going the right way I’ll be able to do even just a little more each day.

This is the first time I’ve really been taken down badly with infections even though I am on so many immune suppressants and biologics… and I really realized how scary it is, and how much credit we have to give our bodies for fighting back with the little we have.

Sometimes when focusing on how sick or weak we are, we over look our incredible resilience too.

2 thoughts on “Back to Zero

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  1. I’m glad you had some time away from the ER. It sucks knowing that you might have to go at the drop of a hat.

    You’d better hang on to that guy. Good ones are very few and far apart. I remember one time waking up in excruciating pain and peeing blood. Instead of the EX offering to drive me to an ER, he said “on you can wait till tomorrow”. Needless to say things like that are why he is now an EX.

    Take care, hope you do have more good days than bad.

    Ramona
    from Mississippi

    Liked by 1 person

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