Hello, friends,
It’s hard to believe it’s been almost 3 whole months since the day I came home from the hospital. I’m so grateful to God for each day here. It hasn’t been the easiest road since discharge (which I’ll tell you about below), but it truly has been a gift simply staying home. 🥲
At some of the recent follow-up appointments with my doctors, we discussed how this is the 6th time I’ve experienced sepsis in less than 10 years. 😢 Yes, the body does recover from each episode of sepsis, but as my GI specialist explained, organs become more damaged in the long run as time goes on.. Each bout seems to get harder and harder to fight, and I dread the next time it happens. 😔
It’s hard not to think about all the “if only” scenarios. For example, if only I didn’t have renal magnesium wasting, then I wouldn’t need a port. Or, if only I didn’t have a port, then I wouldn’t experience blood infections/sepsis. Or, if only I didn’t need a port, then I could have a spinal cord stimulator implant again for the chronic pain and get off all the pain medications.
But, if all those “ifs” came true, I don’t think I would lean on God as much! Psalm 119:71 says, “It is good for me that I was afflicted, that I might learn your statutes.” I love what Joni Eareckson Tada wrote in one of her books regarding difficult times, “Suffering has a way of heaving you beyond the shallows of life where your faith feels ankle-deep. It casts you out into the fathomless depths of God.” ❤️
I recently saw my nephrologist (kidney doctor). She ordered a bunch of tests to check up on the renal magnesium wasting. My body doesn’t hold onto magnesium well….that is, my kidneys excrete too much magnesium which is why I need chronic IV access to receive infusions of high dose magnesium. Anyways, the results of these recent tests show that it hasn’t improved at all. It also shows a decrease in kidney function which she says we’ll need to continue monitoring.
My hand tremors have sadly worsened since my hospital stay—it’s challenging to do any hand lettering/calligraphy now (which always requires very controlled fine motor skills). In fact, all of my art that I’ve posted with each of these last several blog updates are older pieces that I’ve never shared before.. The tremors make it hard to hand letter any new pieces.
My hand therapist referred me to a neurology-focused occupational therapist at OHSU which I’ve been waiting many weeks for. My first appointment is finally coming up on June 5th, and I pray that she will have some solutions to help me keep doing my favorite hobby. I’d appreciate prayers for this issue! I definitely don’t want to lose my lettering skills. 🥺
Speaking of neurology, I’ve also been waiting many months to see my new neurologist. I had an appointment scheduled with him on June 13th, but I just found out he will be out of the clinic that day. So now I’ll be seeing his colleague, but that appointment isn’t until July..
Same with my EMG (electromyography) study. One of my doctors ordered this specific test to check the signals of my nerves/muscles, and it was scheduled for the end of June. But the physical medicine specialist who will be doing the EMG will also be “out of the clinic,” so now the test got pushed out to the end of July. I wish doctors didn’t reschedule out of the blue. 😞 It’s hard not to get frustrated, but I have to remember that even the timing of each appointment/test is in God’s hands. ❤️
I have a bilateral lumbar sympathetic nerve block procedure scheduled in the middle of June because the deep leg pain has worsened which makes it so hard to bear. The pain was not bad when I got discharged from the hospital in March, but then it started ramping up in April. My last nerve block was done several years ago, and the pain relief only lasted half a day or so. Could you pray that this upcoming nerve block will be effective and long-acting?
Thank you so much, friends. I’m so grateful for you! 🫶🏻