Please pray ❤️
"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him."
Elisabeth Elliot
Hi, friends,
I wanted to share an update on the last few weeks. Thank you so much for continuing to pray for me—I’ve been really needing each and every prayer lately. ❤️
Sadly, my legs have still been aching terribly all day every day, and it gets so overwhelming to bear this deep aching pain on top of my regular small fiber neuropathy. 🥺 It’s very difficult to focus because the pain is unrelenting, and my pain meds only bring it down maybe 1-2 points. There have been a lot of tears in private, even writing this. :’( We are still trying to figure out what’s causing the leg pain—I have a few big appointments with specialists this month and next.
Sleep is rough and restless with the pain, and on top of that, my PICC line continues to itch terribly every day and night from the mast cell disorder (MCAS). I have to often get ice in the middle of the night more than once because that’s the only thing that helps the itching to calm down. It’s just hard to have a sterile adhesive dressing over my PICC line and not be able to scratch underneath it (since it has to stay extremely sterile). 😭 I have a second opinion with a specialist this week for the MCAS.
Last week, I had a one year follow-up with my neuro-ophthalmologist to check up on the chronic progressive external ophthalmoplegia (CPEO) caused by my mitochondrial DNA depletion. It’s always a little disheartening when my doctor examines my eyes because it reminds me that I can’t look different directions like healthy people. This eye muscle paralysis makes it a challenge to see certain things (normally, one would just move their eyeballs a specific direction, but I can’t). I thank God that I still have my eyesight and that most people can’t tell I have CPEO. There’s a mitochondrial disorder called Leber’s Hereditary Optic Neuropathy that causes blindness, and I’m so thankful I don’t have that. I hope sharing all this is bringing awareness to how bad mitochondrial diseases are. 😢
I also had an appointment with the OHSU wound care center last week for the raw, painful area near my j-tube (caused by that abscess in August). I’ve been waiting numerous weeks to see them! They were very compassionate. The specialist prescribed something I’ve never tried called a “liquid wound dressing.” I see them again in 2 weeks, and if there’s still no wound healing, he’ll try some other things.
On top of all the above, I started experiencing joint pain in some of the knuckles of my right hand. I wish it was my left hand instead because I use my right to hand letter. We’re wondering if this new symptom is possibly connected with the leg pain. So I have to get some tests done for that. When this started, I kept thinking of Joni Eareckson Tada (an amazing example to me!). If she can paint so beautifully while being a quadriplegic, I can surely create lettering art with hand pain. 🥹
I mentioned this already, but it truly has been overwhelming to deal with all that’s going on, especially during this Christmas season. 😢 When the pain is so bad and I can’t sleep, I think of the lament Psalms and keep crying out to God, “How long, O Lord?” I may have missed some, but I counted how many “how long?” questions to God there are in Psalms. There are sixteen! It’s a reminder to me that the Lord can take all our cries and questions. It’s not too much for Him. He does not forget the cry of the afflicted (as Psalm 9:12 says). Isn’t that so encouraging?
Could you please pray that I will keep trusting in God’s plan and that my faith will remain steadfast in spite of all that’s happening? I love you and am so thankful for you, dear friends. ❤️ Merry Christmas. 🎄
| And every prayer we prayed in desperation
The songs of faith we sang through doubt and fear
In the end, we’ll see that it was worth it
When He returns to wipe away our tears |
-Hymn of Heaven
