Wow, it’s been a while! I just wanted to check in and post a health update. 😊
I’ve been home from the hospital for almost 2 whole months now which is so hard to believe. Time is definitely flying, but at the same time, my recovery from the mito crash has been slow.
I’m still doing PT and OT at OHSU, and OT is especially hard. Despite easy exercises that my hand therapist has me do, my arms and hands ache terribly the following day. 🙁 So we have to keep going one step back and try even simpler exercises. My OT said it will take several months to fully recover from this hospital stay/mito crash that I had because of the mitochondrial DNA depletion in my muscles.
Since May or June of this year (it’s hard to keep track of everything!), I’ve been experiencing really sharp pain in my mid spine—my back muscles spasm horribly around the area. 🙁 I saw my orthopedic doctor, and he ordered a spinal MRI (if I counted correctly, this will be MRI #21!). He also prescribed a muscle relaxant medication called Baclofen. It calms down the muscle spasms somewhat, so I’ll be slowly increasing this med to see if it can help even more….it’s so nice to have a little relief from these painful spasms! It’s rough to deal with this back pain on top of my other chronic pain.
This month marks one year since being off of IV nutrition (TPN)! It’s such a huge blessing from the Lord, and I’m so thankful to not have to be hooked up to an IV pump during the day! But, the past couple of weeks, I’ve been experiencing more abdominal pain and distention after eating. I’m not tolerating food as well, so my GI doctor is having me try another GI motility medication.. I would really like to stay off of TPN as long as possible!
In August, I saw my local neurologist for the last time. She’s a pediatric neurologist at Randall Children’s Hospital and completed a mitochondrial fellowship up in Seattle. She was so kind to see me for several years but feels she can’t see me any longer as I turned 28–she said I really need a local adult neurologist. *Side note: my mito specialist in San Diego is a neurologist, and he is amazing….but, he’s so involved with the mitochondrial clinical trial side of things and is very busy, so anytime my doctors here in Oregon need to call him for input, it’s too difficult to reach him.* 🙁
My PCP referred me to OHSU neurology, but they denied the referral, saying that they “feel they don’t have the expertise to support my condition.” 🙁 So my PCP referred me to a neurologist at Tuality, but that didn’t really go well either. This neurologist has never had a mitochondrial patient, and he only sees very common neuro issues. It’s hard when so many think I’m too complex. 😔
One last thing—I had a virtual appointment with my favorite doctor in Seattle this week (my pain specialist at UW!). I told him about how challenging it’s been trying to find a new neurologist. Well, there is a neurologist at UW that he knows, and he said that this doctor is wonderful (he’s even a Top Doctor with Seattle Monthly magazine!). My pain dr. referred me to him and sent him an email about me.
Here’s something neat: I actually emailed this neurologist back in 2013 when I was trying to find a mitochondrial specialist. He emailed me back and was so kind to me. 😊 Anyways, he does see patients with mito! And he is always booked out numerous months, but guess what—I already heard back from his clinic, and he wants to see me in December! Isn’t that so awesome?! ☺️ What a gift from God! ❤️