Praises & Prayer Requests

Dear friends,

These last several months, I’ve been working hard every day, making sure my Pain With Purpose shop is ready to be officially opened.  Not only have I been creating art daily for new notecard, bookmark, and magnet designs, but I’m also using an e-commerce site that’s different than Etsy because Etsy sadly has so many fees..  It’s taken a lot of time learning the ins and outs of the new site on top of listing every single item with its description, picture, quantity, and weight—my mind is blown by how much is involved!  Definitely makes me appreciate small shops even more. ❤️

I’ve also sadly had to deal with numerous challenges from my supplier who prints the notecards.  They did an amazing job in the past, but for some reason, the quality of their printing started showing issues, so I’ve been on the phone countless times to get those resolved.

All that to say, I’m so excited to share that, Lord willing, my store will finally be opening at the end of September. 😍 I hope you’re excited like I am!

Now for the good and not-so-good medical update..

A few months ago, I shared that my doctors wanted me to try a new/safer pain medication. Well, it has really helped my leg pain (which is wonderful!), but at the same time, it’s also been causing the unfortunate side effect of insomnia. 😞 When I was taking a higher dose of this new medication, I wasn’t falling asleep until after 6-7 AM. So I decreased the med, and I now fall asleep between 3-4 AM which has still been so hard. I’m exhausted every day from only getting about 6 hrs of sleep per night—it would be ideal to obtain at least 9 hrs of sleep since my body has such a significant mitochondrial depletion.. I have an appointment with my sleep dr. at the end of September to figure out what to do, and in the meantime, I’m trying to adjust different meds or add other natural sleep aids, but it continues to be rough. 😢

In other news, I’ve shared this many times throughout the past decade, but due to having hypermobile/loose joints from Ehlers-Danlos Syndrome Type 3, I tore my left hip labrum in 2016 and had it surgically repaired that same year. I then tore my right hip labrum in 2018 and had it surgically repaired. Well, I re-tore my right hip labrum in 2021, but sadly, I never had the chance to get it repaired because of so much going on mitochondrial-wise.. I wrote in a previous post that I started experiencing left hip pain and pain behind my hip 3 months ago. I had yet another MRI arthrogram where the radiologist injects dye into the joint. I’m sad to say that the results are not good. There’s a degenerative hip labral tear from the posterior 11:00 position to the anterior 2:00 position which means it’s much bigger than my previous tears. 😭 I’m grateful for answers, but it sure has been hard to have pain in both hips! My PCP referred me to orthopedic surgery for their opinion..

I also had my right shoulder MRI completed, and due to having loose joints, the results showed some fraying of the rotator cuff, fluid in different spots, and areas of tendinosis. Thankfully, it’s not severe, but I have an appointment next month with my physical medicine specialist to talk about options.

Last month, I saw the second opinion rheumatologist to go over my autoimmune results. He wanted repeat testing but through a reference lab like Labcorp. So I had that done. We did get my results, but he’s booked out past January! So I met with his PA recently. Unfortunately, my results looked even worse in a way. I was diagnosed with an “undifferentiated autoimmune disease.” This diagnosis is when you have numerous abnormal labs and harmful antibodies in the blood, but you don’t fully fit a certain criteria for specific autoimmune diseases like lupus, polymyositis, mixed connective tissue disease, etc. But because of my abnormal labs, I will be treated as if I have the early stages of lupus. I’m being started on a popular but pretty safe lupus drug. It sometimes has a very rare side effect of retinal toxicity. So I have to get a baseline “optical coherence tomography” (OCT) eye exam through my neuro-ophthalmologist at OHSU. I don’t see her until the end of September, though.. When I do eventually start this new drug, could you please pray I will tolerate it and have no allergies or bad interactions? ❤️ Could you also pray that this treatment will help the joint pain in both shoulders and elbows—they hurt so much every day. We’re still not sure if the severe neck weakness I experienced for 7+ months was some sort of autoimmune flare, so we’re praying that this drug can prevent the neck weakness from coming back. It’s amazing and a huge answer to prayer that my neck is doing as well as it is! Feels back to normal! 🥹

Here’s another big praise, too. My mitochondrial depletion symptoms have been pretty stable lately—I know it’s only by God’s grace and your prayers! 🥲 On top of that, it’s been almost 10 months (a great record!) since I was last in the hospital for a mitochondrial crash! The time before that one, I had a severe mito crash followed by sepsis, so I was in the hospital for more than 5 weeks from the end of January through the beginning of March 2024.

Despite these latest challenges with joint pain, labral tears, and rheumatology issues, I’m just so thankful to God for this long period of feeling stable mito-wise. 💚

I want to be honest, though. I’ve been feeling much better lately, so it’s gotten harder to be “stuck” at home. 🙁 I don’t have a car and can still only drive short distances. I never could have imagined that I’d be almost 33 and in this situation. When I was feeling especially trapped at home and watched everyone get to do the things they wanted to do outside of home, this was the headline I read for that day’s devotional by Paul David Tripp: “No matter how stuck you might seem, something in your life is new every morning: the mercy of the Lord.” That immediately brought tears to my eyes because it is so true. 😭 The author continues on, saying, “Each morning the people of God are blessed with mercy from the Lord that is form-fit for the trials, opportunities, pressures, obligations, griefs, and temptations of that day. God’s mercies are not sitting dusty in a warehouse. No, like fresh fruit, they are hand-delivered by the Savior every day.” I hope this passage is an encouragement if you feel “stuck,” too. ❤️

Thank you for being on this long journey with me and for continuing to pray—I’m so blessed by your love and support! To end, here are a few more card designs I’m excited to share when the shop is open! 😊