Dealing with infection.

Kerissa • October 3, 2015

Oh I just can’t catch a break.

Last week, I had to say goodbye to my home care nurse.  She changed my central line dressing site and drew labs at my house every single week for 9 months.  Long story short, the home health agency she worked with got bought by a huge company.  She didn’t really like all changes involved, so she found a new job.  I’m going to miss her!  She was a very caring and compassionate nurse!

For the past week or so, I started experiencing severe pain, intestinal spasms, and other symptoms near my jejunostomy feeding tube.  The pain’s been so bad that I wanted to go to the ER on Tuesday!  Thankfully, I was able to avoid going because my GI surgeon squeezed me in this past Wednesday.  She thinks I have an infection because the whole area is inflamed and bled a lot.  That would explain why I haven’t been feeling super great lately.  She had to do a “needle and drainage” procedure right then.  That was so painful, and the needle was huge!  I’ve been started on 3 days of antibiotics.  If things don’t improve soon, she wants to see me back.  She’ll order more imaging like an abdominal ultrasound to look into this further.  Praying this gets better because the pain is horrible!

I had a total of 5 appointments this week.  Saw Cardiology, and my dr. is pleased to hear that the additional sodium to my TPN helps reduce the dizziness and high rates.  Still haven’t had a chance yet to dissolve sodium chloride tablets and flush them through my tube, but hopefully next week!  I see him again in 6 months.

I met my new home care nurse yesterday afternoon.  And so far I like her—she’s very easy going and laid-back!

The Periodic Fever Syndrome mutation I have is related to a rare auto-inflammatory disorder called Familiar Mediterranean Fever.  And the funny thing is, I’m not Mediterranean. lol  Basically, the gene MEFV is defective and can’t regulate inflammation.  My rheumatologist spoke with his colleague to see if she can get me in sooner than January.  She said she’ll look at her schedule and try to get me in asap.

I received a copy of my continuous video EEG report, and my neurologist noted that I have diffuse cerebral dysfunction and diffuse “slowing”…  Sounds lovely, right?  Just another finding to add to my long list..

Continuing to rely on the Lord for His help because there’s nothing else I CAN do.  He is my rock and fortress!

October prayer request

By Kerissa Lee • October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

Praises & Prayer Requests

By Kerissa Lee • September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23