One year ago today.
“The manifestation of God’s glory is not limited to miraculous healing. God refused to remove the apostle Paul’s “thorn” of suffering so His grace might be seen and proven sufficient. Though no one would choose hardships, there is no greater proof of God’s power and grace than when He gives a person supernatural strength within the pain. Such men, women, and children experience God’s glory in a way which most of us know nothing. Often this brings greater impact from God than would a miraculous healing!”
~Glory in Suffering
Hello friends,
*This update is mainly for those who aren’t on Facebook.
But regardless, thank you all for praying for me as I travel on this bumpy road! I’m so grateful for you. And I will keep pressing on with the Lord’s strength.*
Oh it’s been rough. I mentioned in my previous post how I haven’t been feeling my normal. On February 23rd, I had an evening appointment with my PCP’s colleague at OHSU, and he ended up directly admitting me to the hospital. I was so thankful to the Lord I didn’t have to be seen in the ER and also that I didn’t have to share a room with anyone! The inpatient team followed my mitochondrial protocol letter and aggressively treated me with bag after bag of IV fluids with D10. I also was given daily infusions/boluses of IV carnitine. My potassium was still lower than my normal, so I was given additional liquid potassium through my feeding tube. My GI dysmotility was horrible (I had terrible nausea and vomiting), and I had no appetite—the doctors wanted to work on that before discharging me. So I was in the hospital for 4 nights.
We don’t exactly know what caused this “mito crash,” and I’m still not feeling back to normal (I continue to have an occasional achy back and episodes of nausea……but I really don’t want to have to go back to the hospital!!).
I had a follow-up with my PCP’s colleague the day after I got discharged. He’s only 8 years older than me.
He’s very kind and thorough! He thinks the severe headache I’m still experiencing is because I’m pretty anemic from not having enough iron. So he ordered 5 weeks of IV iron infusions to be completed once a week. I’m also still dehydrated, so my IV fluids will be increased to a liter a day for one week instead of 500 ml a day.
He also ordered a dual-energy x-ray absorptiometry (DEXA) scan to check my bone density since I fractured a rib from coughing.
Regarding my cough that I’ve had since November that’s still not going away, he’s concerned that I continue to need my inhaler and other cough medications. He wants me to email him this week or next if there’s no change, and he will refer me to ENT.
I do see my pulmonary dr. next week as well, so we’ll get his input.. I have a follow-up with my GI dr. the same day, too.
I also have an appointment with my OHSU palliative care dr. this Friday. It’s been super busy! I did order CBD hemp oil at the recommendation of the naturopathic physician who works closely with the pain dr. I saw at UCSD medical center in January. It’s very expensive for just 100 ml. : / Unfortunately, the company has a high volume of orders during this time, so mine won’t arrive until around March 20th..
P.S. One year ago today, I became septic around midnight from a central line infection. In a way, it still seems like yesterday.. The paramedics had to come upstairs to my room because I got really sick just like that and was so weak. The rigors (severe, shaking chills) were the worst! I had 6 or more warm blankets on top of me in the hospital, but they didn’t help at all.
I thank God for His protection over my life during that time as I know things could have went downhill fast (e.g., septic shock). I never want to have sepsis again, but it’s always a big risk because I’m on TPN and have a port. But I’m in the Lord’s hands, and that’s so comforting!
