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.
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
“Be still, and know that I am God.” -Psalm 46:10
