* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media. 💚 *
I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019! So I of course had to change it to green. 😉 You know how diseases have a specific color/ribbon (gold is for childhood cancer, etc.)? Well, green is for mito. 💚💚
To bring more awareness, I just wanted to share a little about how Mitochondrial DNA Depletion Syndrome affects me which is the specific mitochondrial disorder that I have (there are many types).
Because my mitochondrial DNA is getting depleted over time (mitochondria are the organelles that make energy for all the organs and cells to function properly), I have to sleep over 15 hours every day which has always been so hard, especially in the winter—I wake up when it starts getting dark and go to bed when it’s dark so I don’t get to see much daylight at all. 😔 When I don’t get enough sleep, all my symptoms get worse, especially the pain. 🙁
Speaking of pain, I get headaches everyday, have small fiber polyneuropathy in my hands and feet (which causes terrible burning, aching pain), experience abdominal pain when the GI dysmotility is even worse than usual, neck pain because of the hypertrophic arthropathy that I have due to the congenital vertebral fusion I was born with, and also pain on the bottom of my right foot due to the vascular malformation I was also born with that grew back this year (even though it was removed in 2010). I have to tip-toe on my right foot because the mass hurts so much. I’ve had more than 18 surgeries and have another foot surgery coming up to remove the mass once again. I’m on really strong pain meds, but even those don’t take it all away.. 🙁
I’ve had sepsis 3 times (2016, 2017, and 2019) and septic shock once (2018).
I have a j-tube in my abdomen to flush medications through because big pills get stuck in my esophagus caused by esophageal dysmotility/weak peristalsis. I also have a central line in my chest for IV nutrition and IV magnesium for renal magnesium wasting.
I have muscle weakness and fatigue so I have to use a wheel chair for long distances. I have numerous eye disorders caused by mito—ptosis (drooping of the eyelids, especially when I’m really tired), external ophthalmoplegia (paralysis of certain eye muscles), and nystagmus (involuntarily “shaking” of the eyes).
I also have a mast cell disease, POTS, EDS, and Wilson’s Disease (my doctors say I’m so rare). 😔
I have centrally-mediated vertigo and also complex sleep apnea (both central and obstructive). I have to use an adaptive-servo ventilator at night because without it, I only breath on my own 40% of the time.
I’ve left out many other medical things, but you get the gist.. 😜
As you can see, having mito has been extremely life changing and more difficult than words can explain, but I want you to know that I really and truly could not do this without Jesus. These beautiful lyrics are by @elevationworship, and when I call on Jesus, He is there for me. He helps me. He restores my soul. He gives me purpose in all of this pain. 💚💚
P.S. If you made it this far, this month also marks 2 years since I started learning how to hand letter!! ☺️ It’s been one of the best decisions ever, and I’m so glad I took Becca’s amazing online courses (@thehappyevercrafter on Instagram). Lettering has been so therapeutic to me while I’ve been on this journey. 💚