“Joy is not necessarily the absence of suffering. It is the presence of God.” ~Sam Storms
Last week, I threw up a ton again, and it never gets easier. 🙁 We don’t know what caused it this time…but my GI dr. thinks these vomiting episodes are from my gastroparesis/intestinal dysmotility.
My feet have been burning horribly lately. I don’t know if the nerve pain is getting exacerbated by the change in weather or what. My pain dr. did switch up one of my medications a little while ago, so it could be because that is not at a therapeutic level yet.
Physical therapy progress for my hip is still not where my therapists would like it to be. The aching pain keeps me up at night. I take some of my other pain meds, but that doesn’t always help, too. I do have my ultrasound-guided hip steroid injection scheduled tomorrow, so they’re hoping it helps the pinching pain/stiffness.
We found out last week that my insurance denied my muscle biopsy tests through Baylor. 🙁 We could have known this a long time ago, but the person in charge of pre-authorizing was on vacation. And this task wasn’t referred to someone else! So now my neurologist has to start the appeal process. I have a love/hate relationship with health insurance..
I recently saw my primary care doctor, and I’m so so thankful for her! I’ve never had a PCP like her! She has been doing so much to try and make my coordination of care better. She’s even working directly with the ER department at OHSU so that my ER mitochondrial protocol (that my neurologist wrote up last year) is implemented faster whenever I do have to be taken there.. She’s going to “note” that I shouldn’t share a double room when I need to be admitted. Of course, some of this will be out of her control, but she would like the ER doctors to have a step-by-step guide for them to try and follow.
I started having pretty low Magnesium levels again despite being on daily IV Mg infusions. This was causing horrible muscle cramping, and it was making my muscle weakness, nerve pain, and headaches worse. I couldn’t even finish a full session of physical therapy at OHSU one day because my muscles were cramping up too much. 🙁 My PCP talked with my nephrologist who quickly made arrangements for my IV Mg to be increased. I now receive almost 50 GRAMS (not milligrams!) of Mg every week. It’s so terrible how my kidneys aren’t able to hold on to Mg. 🙁
This afternoon, I had my monthly follow-up with my GI specialist. He is always so kind and thorough at each appointment! 🙂 We went over my pulmonary resting energy expenditure results, and in his words, I am “a conundrum.” The results are very confusing, so I won’t try to explain them here! lol At this point, he doesn’t want to decrease my TPN. I wish I could have a break from it, but he’ll re-evaluate next month..
A little while ago, I read a familiar passage in chapter 4 of 2 Corinthians, but this little phrase especially stood out to me this time: “afflicted in every way…” This kinda rings true for me because mitochondrial disease affects so much. But do you know what’s right after those 4 words? “But not crushed.” I looked up the definition of crush, and it means, “to deform, pulverize, or force inwards by compressing forcefully.” All these symptoms I experience can be so heavy to handle (physically, emotionally, and spiritually). But just a few verses later, these afflictions are described as light. The complete opposite! All this happening will not be able to “crush” me and weigh me down because I have the Lord Jesus on my side. He, in His grace, fills me with strength to fight this health battle daily. When the discouragement sometimes creeps its way in, I try to remember these verses, not lose heart, and view everything that happens in light of eternity. Mito (and all that comes along with it) is preparing for me an eternal weight of glory beyond all comparison (2 Cor. 4:17)!!