So hard to believe we’re already halfway through the year! 🤯
A lot has happened medically since I last blogged, so here’s a little update… It’s been pretty rough lately. 🙁 So I just wanted to thank you for continuing to pray for me. Your prayers definitely keep me going. 💚
About 2 months ago, I got diagnosed with hypoparathyroidism which can also occur with mitochondrial disease. 😔 I’ve been experiencing numerous symptoms—there aren’t really any good treatments for it, so I have to go back and see my naturopathic dr. But I haven’t been able to see him yet for this issue because I’ve had TOO many other doctor appointments the past several weeks. 🙁
In addition, I started experiencing horrible neck pain, and I don’t know what’s causing it. 🙁 The OHSU comprehensive pain center has become very holistic in the last 2 years, and they now offer chiropractic treatment (as well as acupuncture, massage therapy, and naturopathic medicine). So my pain dr. is having me see a chiropractor on top of my regular physical therapy appointments that I have twice a week….but sadly, none of this seems to be helping my neck. 🙁 My physical therapist has even been doing a lot of “cupping” on my neck/shoulders.
I have an appointment with my orthopedic doctor on June 17th, and I’m praying he will be able to figure out what’s going on. It’s just been so difficult to deal with this new neck pain on top of all my other chronic pain.
And then, to make matters worse, for those who may not remember, I was born with a hemangioma (benign blood tumor) on the bottom of my right foot. Well, growing up, it caused so much pain to the point that I couldn’t bear weight on it.
So, at age 17, I had it removed at OHSU Doernbecher Children’s Hospital. Long story short, it’s now been 9 years, and sadly, it seems to be growing back. 😭 It’s causing so much aching, throbbing pain, and I can’t bear weight on it well. My pain dr. thinks it’s wrapping around a nerve or pressing into it. :’(
I saw my PCP this past Monday, and he wonders if the surgeon wasn’t able to remove all of the “bad” cells then or if this is going to become a “thing” where I need surgery every 8-9 years… So he is referring me to a surgeon to hopefully get this removed again..
I’ll always wonder why I (and none of my siblings) was the one to be born prematurely with this birth defect as well as the sinus defect near my ear (which was repaired when I was 10 years old). I also always wonder why I’m the only one with mito….and EDS….and Wilson’s Disease….and mast cell disease, etc. and why none of my siblings are affected (as far as we know..).
I wish things were different….for example, it’s been 8 whole years since I graduated from high school, and I realize that I could have graduated from med school (one of my dreams!) this year if none of “this” happened.. But as you can see, my life had/has a different direction, so the only thing I CAN do is keep trusting the Lord with this wild journey.
I still have so many questions, but you know what? The Lord continues to give me grace for each day and His peace amidst all this unknown. It’s comforting to know that, even before I was born, He had a specific plan and purpose for my life. I recently read this quote by Morgan Harper Nichols, and I thought it was so true: “You do not have to know what is going to happen in order to have hope.” No matter my circumstances, my hope will always remain in Christ! And I can do all things (whether it’s dealing with more diagnoses and more pain or having more surgeries..) through Him who strengthens me. ❤️
Next month, my parents, sis, and I head to San Diego to see my mito specialist. I have so much to update him on, and I look forward to hearing the latest on clinical trials since the UMDF (United Mitochondrial Disease Foundation) national symposium for 2019 is happening this month. We’re also going to stay an extra day in San Diego (4 nights instead of the usual 3), so I’m excited to explore more! 🙂