More Hard News
"Weeping may tarry for the night,
but joy comes with the morning."
Psalm 30:5
Dear friends,
I received some more hard news these last few weeks, and I would be ever so grateful for your continued prayers. 🥺
I shared in my last post that one of my doctors referred me to a movement neurologist for my tremor. Well, the referral was rejected once again, and when I was told that, I burst into tears. I just feel so alone when doctors don’t want to see me. :’( And it breaks my heart when I’m not able to get help for my symptoms just because I have a “rare disease they don’t treat.” I’m trying to give this movement neurologist the benefit of the doubt—maybe there’s an actual review board that looks at referrals before sending them off to the appropriate sub specialty. So maybe my referral never even reached this specific neurologist? I told my physical therapist who’s been part of the movement disorders team, and he is going to try to get in touch with the dr. and advocate for me. I don’t know what to do if he still won’t see me. I even tried to see a movement neurologist from a different healthcare system (outside of OHSU), but he isn’t accepting external referrals. 😢
I heard back from the metabolic geneticist. She was able to talk with the biochemical geneticist in Colorado, and sadly, he doesn’t have an IRB (institutional review board)-approved protocol yet which is needed to start the proteomics research study. I’m waiting to hear if he gave her an estimated timeline..
On top of all this, my port site started getting tender, swollen, and bruised. We don’t know what’s causing this since my labs are perfect, but we’re praying the site doesn’t develop an infection later on. Because my port site started looking worse these last few days, I have to stop using my port, and my GI dr. ordered a PICC line to be placed urgently. 😭 My heart is so weary from dealing with one thing after another. 😔
Needing a PICC again is a huge disappointment because my family and I are going to Hawaii in 3 weeks to celebrate my parents’ 40th wedding anniversary. And all these months leading up to it, I was so excited to take advantage of having a port vs. a central line—one can swim with a de-accessed port. Now that I have to get a PICC, I can’t swim or even try snorkeling. 🥺 You’re probably thinking to just enjoy being in Hawaii! Yes, I am SO happy that we’ll get to all be together as a family. But I’m also sad, too, at the moment because this is just another reminder how difficult it is to live daily with such a rare disease like mito.. I wish for just one day that I could have a break from all medical things. That’s why I continually long for Heaven. I will no longer have a broken body!
I don’t know why this couldn’t have happened until after our family trip. 😢 But one thing I do know—God wants me to keep trusting Him even through the numerous questions. ❤️
My heart was so encouraged through Lysa Terkeurst’s recent words, “If we stand firm on His goodness and know everything He allows is somehow flowing from that goodness, then we will have a lot less fear in trusting Him. Faith in God means being assured of His goodness even when what He allows doesn’t feel good, seem good, or look good right now.”
There are other medical issues going on which I will share in a future post. But, in the meantime, I’m trying to entrust all things to God’s loving care. “Therefore let those who suffer according to God’s will entrust their souls to a faithful Creator while doing good” (1 Peter 4:19). ❤️
