“When the storms of life hit, they almost always appear stronger to us than God’s word. It is crucial for us to remember that our perceptions can be deceptive. When circumstances strike fear into our hearts, the questions we must always ask ourselves is, where is your faith? What God wants is for you to trust what He says over what you see.”
~unknown (I took a screenshot of this quote months ago and can’t remember who wrote it.. 😅)
On June 4th, 2011, I graduated from high school. That was seven years ago. 7 whole years. 🙁 It’s been hard….really hard, knowing it was that long ago and also how I’ve been doing the same exact thing since. Fighting mito every single day. In 2011, I only had the complex regional pain syndrome diagnosis…I wasn’t yet diagnosed with mitochondrial DNA depletion, Ehlers-Danlos, small fiber neuropathy, mast cell disease, dysautonomia, and much more. I didn’t use a wheelchair, have a feeding tube, or need a central line. I wasn’t hooked up to IV magnesium or IV nutrition for 21 hours every single day. I didn’t need to sleep 16-18 hours every day.
Like all those who graduate, I had many plans. I wanted to study medicine, get a job, drive…..but none of that came to pass. :'(
Yes, sometimes it all feels like a bad dream, but….through this whole journey, I’ve also seen God’s abundant grace. I never could have endured (and continue to endure) the countless doctor appointments, surgeries, procedures, tests, blood draws, IVs, ER visits, and hospital stays without Him by my side. I’ve been through horrible procedures and tests (some too awful to share), and I remember just crying out to God that I need help to get through them.
I have learned so much going through this, but I will share two things: the Lord does hear your cries and He really is there for you. He is not a distant God.
He knows my pain and suffering….and He doesn’t just “stand by and watch.” He carries me through the hardest of days and gives me so much grace to bear the unimaginable.
Yes, of course I wish I didn’t have to go through any of this. But I trust in His plan….He knows what I can’t see. So I won’t get depressed or feel hopeless. Because I do have a Hope. I have purpose. And I may not know all the answers to my questions….I may never know until Heaven. But I do know the Lord called me and chose me for this path—-and even though I can’t “do much,” I’ve learned that I can serve Him in other ways. Like being a living testimony of His goodness and grace.
Anywho, just had a few reflections that I wanted to share. 🙂
In other news, I recently had my monthly GI follow-up. I’ve been having very painful intestinal spasms that push my feeding tube “in and out.” We also discussed if it’s possible to do a “TPN holiday” or even get off of my nightly TPN. Then I’d be able to do my IV magnesium at night instead so that I wouldn’t have to be hooked up during the day. But in order to do this, I would need to increase my tube feeds and/or eat enough protein orally. It’s so hard increasing my tube feeds because the longer I’m hooked up to formula, it just seems to “build up” in my small intestine and not move well. I have to keep trying, though..
Next week, I have my hip MRI arthrogram. This will be my 20th MRI… The number of MRIs I have might pass my age soon! An MRI arthrogram is a two part procedure where I go to radiology first to get dye injected into my hip joint. And it’s very painful, so not exactly looking forward to that. 🙁 The dye also irritates the joint for several days afterwards.
Next month, my parents and I head to San Diego to see my mitochondrial specialist. I haven’t seen him since January 2017!