The latest.. (a mix of wonderful news and rough news)

Dear friends,

I was going to start off this update with some rough news (which I’ll share below), but I just received an important phone call this afternoon. God knew my heart was really struggling and that it needed some encouragement. The news is that I GOT ACCEPTED to the Undiagnosed Diseases Network through Harvard!!! 🥹🥹  Just want to clarify that not every accepted patient finds the disease-causing gene, but it’s still so amazing that my case got accepted in the first place! All praise and glory goes to God!!! ❤️  Thank you so much for praying for this, too. 🥲  I have a “consent call” coming soon where I’ll learn what the next step is. :)

Now to the challenging news…. I don’t know how it even happened, and it just came out of the blue. Last week, I started experiencing left low back and hip pain, and it has continually worsened to the point that I was in tears during the night due to the pain. 😭 It’s been rough to deal with a new pain issue combined with all of the other pain: deep, achy pain in my legs from the mitochondrial depletion, nerve pain from the small fiber neuropathy, hip pain from the right hip labrum that I tore a second time a few years ago (I haven’t been medically stable to get it surgically repaired again), and joint pain in both shoulders and both elbows from a currently unknown issue. 🥺 Still waiting to see the rheumatologist in late August. It’s difficult to be in pain all over my body 24/7, and it’s hard not to get overwhelmed by everything. It’s especially rough when I have to act normal on the outside even though it hurts so much on the inside. 😭

I’ve been crying out to God, asking for all this to resolve, but if it’s not his will, that he will help me to endure. In Psalm 22, David lamented, “I am poured out like water, and all my bones are out of joint.” That’s what my thirty-two-year-old body feels like. 😔 And yet, later in the same chapter, David was still able to praise the Lord: “For he has not despised or abhorred the affliction of the afflicted, and he has not hidden his face from him, but has heard, when he cried to him.” Please pray I can find ways to praise God in the midst of this constant pain. ❤️

It’s also been feeling like the enemy doesn’t want me to open my upcoming store because every time I start to physically improve (like when I recovered from this latest mito crash), I get closer and closer to officially opening, but then…something new like the above happens. 😢

I saw my PCP, and we talked about what could be causing this back and hip pain. We’re not sure if there’s something going on in the lumbar spine. Or if I possibly re-tore my left hip labrum again but in a different spot.. So he’s going to connect with my physical medicine specialist to see what type of scan should be ordered. In the meantime, he increased my pain medication, and I see him again virtually next week.

Even though it’s been a tough last several days, I wanted to end on a positive note to share some more huge news that I’ve noticed my neck has been getting stronger after a long 8+ months. Isn’t that so wonderful? This joy has been dampened a bit by all the other hard things going on, but it’s still a wonderful gift from God. 💚 I can’t wait to surprise my neuromuscular neurologist the next time I see him since he was the one who thought my neck strength couldn’t improve.

When I next update, I hope by then I’ll know the full plan from the UDN. 😍