This may be a long post, but I just wanted to put my thoughts down on “paper.”
This has been a really hard year….month….week. I haven’t cried this much in a while. All weekend, I had to deal with a terribly long episode of severe nystagmus and an oscillating “world.” It always feels like I’m going to go blind. Sunday night, I experienced such nausea that my mom even had to put a bin next to my bed. 🙁
Tuesday, I saw my pain dr. And, as fun as it always is to see him, this was kind of a hard appointment. I asked him if he knows much about mitochondrial disease, and he told me that there are really bad cases where your muscles stop working at a young age and pretty soon you die (and mito doesn’t just affect muscles…it affects all the body systems since every organ needs energy)….or, there are those cases where you don’t know you have mito until you’re 70. And we’re not sure yet which case I am… Although, the younger you are, the more severe it is.. And I’m only 20. This is what I love about my pain dr. His honesty. And his compassion. I can’t remember his exact words, but I do recall him saying something like—all these conditions I’m dealing with don’t define me and we just need to figure out how to proceed with things and live a successful life.
I asked him for a new pain med to try since I still get severe headaches. So he told me to consider this muscle relaxer that has been known to help neuropathic pain (and headaches) and maybe even calm all the myoclonic jerks I have every day.
The plan is to await the whole genome sequencing results. If it comes back normal (as it very well may be), then I pursue a muscle biopsy and/or more genetic testing through a very experienced lab down in California. The dr. there has been doing a whole bunch of research that mitochondrial disease and CRPS is possibly connected. And he’s even found mutations linked between both.
Monday night, my 90 year old grandma suddenly had a heart attack (just like what my grandpa had about 26 1/2 years ago). The doctors were able to stabilize her, but she was in a coma in the icu and on a ventilator. They were going to leave her on life support for a couple days and reassess her in 24 hours. After my pain appt., dad, mom, and I went to see her. And I’m so thankful I did. Because…at around 10:25 pm that night, my grandma went to be with Jesus. We’re still in shock because it all happened so suddenly.
|I don’t remember ever seeing this photo of Nyin Nyin (which means grandma in Chinese) holding me when I was born. 🙂|
|Holding me again at my 1-year-old birthday party. 🙂|
|Me and my three siblings many years ago giving Nyin Nyin a present for Mother’s Day!|
The next day, I wanted to read the section in Revelation where it tells us of the coming new heaven and new earth. I long for that day when God “will wipe away every tear from [our] eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Revelation 21:4) How wonderful it will be! No more genetic diseases with no cure, nor more heavy hearts, no more out-of-proportion pain, no more death! That is why I don’t have to fear the future or of dying young (if that’s God’s plan for my life). This earth is not my home any way. I am going to my real home to dwell with Jesus Christ!
One last story—I follow a mother’s blog of a 5 year old girl with mitochondrial disease. And one time, that little girl was not doing very well. A friend asked the mom, “Is she dying?” The mom replied confidently with no fear, “Aren’t we all dying?”