Challenging times.
Dear friends,
Just wanted to post a little update. On Tuesday, I had another DEXA bone scan to check up on the osteopenia, and then I saw my endocrinologist right afterwards. Sadly, I have more bone loss in my hips. And because of my hypoparathyroidism (caused by the mitochondrial disease), I’m not able to absorb calcium and vitamin D which is vital for bones. In other words, the parathyroid gland is what activates vitamin D so that it can be used by the body. So she ordered a bunch of labs again to check my parathyroid (PTH) level, activated vitamin D level (which is a different test from the normal vitamin D test), and more.
We got the results back, and sadly, my doctor emailed me and said I have to start a bone injection that needs to be done every 6 months. There are side effects with this injection, so I’d appreciate prayer that it won’t cause the possible “bad” effects like infection or jaw necrosis.. Thankfully, she has never had a patient experience the jaw bone death.. I also have to take an activated vitamin D medication called Calcitriol and keep taking 1200 mg of liquid calcium. I did and still do take some naturopathic “homeopathic” medicine for this hypoparathyroidism issue, but unfortunately, it’s not helping, so that’s why we have to resort to this bone injection…. Since I’m only 27, my doctor wants to do as much as possible so that the osteopenia doesn’t progress to osteoporosis..
In addition, those 2 appointments this past Tuesday were my last for a while….
OHSU has cancelled all doctor/physical therapy appointments for the next 6 weeks. My physical therapist will be doing some phone appointments with me, and OHSU is also working on the possibility of doing doctor appointments through telemedicine (video). Not 100% sure on that yet..
You may be wondering what I’ve been doing now that I don’t have numerous appointments every week!
Well, I’ve been able to read a lot of books (I do get nystagmus/oscillopsia (shaking of the eyes) unfortunately if I read too much at a time, so I have to pace myself), play the online Scrabble game app with my siblings, hand letter encouraging verses/quotes/lyrics, watch movies with my family, and start opening up an online shop to sell my lettering art on little things like magnets and vinyl stickers!
Also hope to resume my Punkpost job of hand lettering customers’ messages in cards sometime next week… Punkpost has been pretty busy lately because people are sending more snail mail due to social distancing! If you’ve never sent a card through Punkpost, your first card is free if you download the app on your phone!
Anyways, in the midst of this chaotic and uncertain time across the whole world, I’ve been reminded every day that the Lord is still on His throne. Isn’t that so comforting?
He is sovereign and in control of big things like galaxies, planets, the ocean……and He is sovereign over the tiniest of things like molecules, bacteria, and viruses (COVID-19 included)..
Yes, this novel Coronavirus is so very scary. And out of all the thousands of genetic disorders and diseases that could be listed, I was surprised to see that the CDC website specifically added mitochondrial disorders to the “ underlying medical conditions that may increase the risk of serious COVID-19 for individuals of any age
” chart below. I guess even they know how much mitochondrial disease affects…
*Just a little side note: for those who may be new to my blog and have never heard of mito, mitochondrial disorders can affect all the organs of the body because organs need ATP (energy) to function properly (and mitochondria are the organelles that make energy). That’s why I have dysautonomia, terrible chronic pain, fatigue, neurological, endocrine, kidney, gastrointestinal, muscle, eye, and bladder issues, have a central line in my chest for daily IV fluids with magnesium, potassium, and carnitine, a jejunostomy tube in my abdomen for medications, and have to use an adaptive-servo ventilator at night for my central/obstructive sleep apnea and weak lungs. I also have a mast cell disorder, Wilson’s Disease, and Ehlers-Danlos Syndrome which my doctors aren’t sure if they’re a result of mito or separate from it..*
But you know what? My life is and always has been in God’s loving hands. We are all in God’s hands. And the Coronavirus can’t and will never be able to change that. Psalm 31:14-15a says, “But I trust in you, O Lord; I say, ‘You are my God.’ My times are in your hand.” Friends, our days are numbered. And I pray that we (and people all over the world) are humbling ourselves before the Lord, realizing that we are finite, and remembering that this world is not our home.
I saw the movie I Still Believe before all the theaters closed, and wow, it was so powerful and moving…I cried buckets..
I highly recommend seeing it! What a powerful testimony of God’s grace in Jeremy Camp’s life in the midst of his 21 year old wife’s death to ovarian cancer. Instead of being bitter and angry at God for his wife’s death, he chose to walk by faith and BELIEVE in the Lord’s faithfulness…His truth…His holy word. I especially love this line from his song: “Even when I don’t see, I still believe.”
What a beautiful example that we can all learn from during this pandemic!
I wanted to end this post with a poem that I read from Streams in the Desert. I hope it encourages and uplifts you during this challenging time! Know that Jesus loves you unconditionally! Let’s walk by faith, and we will get through this together!
