June 2021 update and prayer requests
Kerissa • June 17, 2021
- I lettered this piece a couple years ago and never shared it until now. I’m so grateful to God that He “does not leave us as we are.” My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise.
- For the past 3ish weeks, I’ve been experiencing lightheadedness along with a severe, persistent headache every single day and night. It’s been so very hard to go through as none of my pain meds have been helping much. On top of mitochondrial disease, I have something called Wilson’s Disease which is where an overload of copper builds up in my organs (the brain and liver especially) unless I take a specific medication to block the copper. Well, there has been a shortage of that med in the US, so I haven’t been able to take it. We’re not 100% sure this is the cause of my headaches and other neuro symptoms, but it seems most likely as not taking the med could be causing copper to build up in my brain. My main pharmacy told us the medication I need is still on back order. But this past week, my parents called numerous pharmacies, and God led us to one that carries it! So so thankful! I would appreciate your prayers that this will alleviate my terrible headaches and other symptoms, and if not, that we will be able to pinpoint the cause…It’s just been so horrible.
- Both of my wrists have been healing pretty well from the surgeries I had in April and May (still doing weekly hand therapy), but something new is going on—there is a painful bump that is growing under my left wrist. One of my orthopedic specialists at OHSU took a look at it and referred me for a wrist MRI as my ortho hand surgeon is booked out until July 20th.
- On top of all this, I most likely tore my right hip labrum again (for those who don’t know, I had left hip surgery in 2016 and right hip surgery in 2018 to repair torn hip labrums).
Not sure how it happened this time, but as I get older, I’ve been dealing with more joint issues from Ehlers-Danlos Syndrome (another disorder I’ve had since 2012). My hip surgeon team ordered a right hip MRI arthrogram to get the ball rolling on whether I’ll need surgery again.
- In addition, my tongue has been getting weak…I’m not swallowing correctly from the weakness, so my tongue is pushing out my bottom teeth. I grew up with a class 3 underbite (the most severe class!) and had to get it corrected, so this new problem is not good.. I saw my swallowing doctor, and I thought maybe seeing his swallowing therapists could strengthen my tongue. But he said that’s the last thing you want to do with mitochondrial disease. Since I’m deficient in energy, doing swallowing therapy would use up all my strength, and I’d be too exhausted to chew/swallow. He said there’s nothing we can do about my weak tongue—he was so compassionate in explaining. He agreed it’s a good plan to see the OHSU dental team to keep my teeth from being pushed out even further…but we’re not even sure if/when I can see them as the board is still reviewing my chart..
- All my diagnoses (Mitochondrial DNA Depletion Syndrome, Wilson’s Disease, Ehlers-Danlos Syndrome, etc.) do not have cures, so my doctors can only treat symptoms. Treating symptoms involves A LOT of medications and surgeries.
- These different issues happened all at once, and it’s been really rough. Each new health trial has been a test of faith. I’m still not able to hand letter, and I miss it soo much. It just feels like yet another thing I love is gone. I know it’s temporary, but still.. So I ask myself continually, “What does God want to teach me during this season?”
- This verse immediately came to my mind from Psalm 37:7–“Be still before the Lord and wait patiently for him.” Just 2 verses before this one, it says, “Commit your way to the Lord; trust in him, and he will act.” Being still and waiting patiently before God is trusting in action.
- As I navigate these new trials, I ask God to give me courage to trust in His plan and this path He has set for me.
Dear friends, I just cannot believe it’s been more than 2 months since my last blog post! So much has happened, but most of it is very happy news!! ☺️ I saw my GI surgeon in September for my post-op appointment (check out my previous post if you missed what surgery I had in August). I’m all healed thankfully, although there is now a noticeable crater on my abdomen where my j-tube used to be. :( Scar tissue inside is what’s causing that, and she told me I need to be careful when carrying very heavy things because I could get a hernia in that spot. 😣 If that happened, she said she can easily repair it! I definitely don’t want another surgery, though! Aside from the short 4-day hospital stay I had in August for that abdominal surgery, I’m soo happy to share that the middle of November 2026 marks 2 WHOLE YEARS since I was last admitted to the hospital for a “mito crash!” I could cry from tears of happiness, and all praise and glory truly goes to God!! 🥹 My previous stretch of stable health lasted about 17 months (from September 2021 to February 2023), so I surpassed that which is simply amazing! Because my health has been doing so well, even more incredible news is that I got a part time job!! I found work through care.com since I LOVE babies and kids. I started occasionally taking care of a 6 month old baby girl—she’s so adorable!! I also sometimes take care of a 5 year old girl with her 3 year old brother. For both of those jobs, I’m just the backup (for example, when extended family can’t provide care). But, last week, another mom reached out on care.com asking if I could be her 2 daughters’ afternoon nanny every Monday—the oldest girl is 6 years old, and her little sister is almost 3 years old. It’s been so wonderful and fulfilling to be able to work. I never want to take for granted how much of a gift it is to have a job! 🥲 I do still have to rest my body on the days I don’t work because my muscle spasticity gets soo intense and painful. 😞 It feels like my back muscles just continually clench up and spasm. Very thankful for the muscle relaxant Baclofen which helps the extreme tightness! The chronic pain also worsens in my legs/back, and my hand tremors do, too (called minipolymyoclonus). Regardless of these symptoms, it makes me so happy and thankful to God for the ability to work! 💚 You might have noticed that I haven’t mentioned anything lately about my Pain With Purpose store. There are a bunch of reasons, but one of the biggest is that shipping has become more and more expensive which is a bummer. 😞 For the past year, whenever a customer places an order, I’ve been paying part of the shipping cost out of my own pocket because I wanted to keep the shipping fee low. I’ve also wanted to keep card prices low because I totally understand how expensive everything is in this economy. But in today’s digital world, a really nice card (at Papyrus, for example) could cost more than $9!! So charging only $2.75 for one of my cards on top of keeping the shipping fee low has been a challenge. After thinking about it a lot, I’ve made the decision to close my store—at least, for now! Next year, it’d be super cool to sell my items (cards, stickers, bookmarks, prints, and magnets) at something like a pop-up! 😊 So I will definitely be sure to keep you posted with any new shop updates! If you did place an order this past year, I wanted to say a big Thank You!! It meant so much to me, and I hope my cards were an encouragement. 🥰 I don't know what God has planned for my future regarding my health and everything else, but I just want to have faith and keep leaning on him for strength, through any future highs or lows. The Lord truly is faithful! Thank you so much for praying for me these past 16+ years. ❤️
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it..
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1
