Is there a cure for Mitochondrial DNA Depletion Syndrome?
Finding Joy
and purpose
Amid Pain
Hi! I’m so happy you’re here! :) My name is Kerissa, and I live in the beautiful Pacific Northwest. I started Pain With Purpose to mainly share medical updates and prayer requests with my close friends and family. But it soon became more than that. Over the years, friends and strangers alike have commented on my posts or sent emails to say that my blog has encouraged and inspired them immensely to trust in the Lord and not give up in the midst of their trials! I hope and pray Pain With Purpose continues to be a testament that God can use our pain for His glory and good purposes, even when we may not be able to see that right away.
STORE COMING SOON.
C.S. Lewis
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Hello friends! I just wanted to check in since I haven’t posted any art since January! Due to being in the hospital for many weeks, my right hand is weak and shaky right now to letter anything, but here is a piece I created a while back… I love this quote. ❤️
P.S. A short little update—I’m hanging in there and so thankful I’ve been home from the hospital for 3 weeks this coming Tuesday. 🥲 My internal body clock has still been struggling to adjust to non-hospital life. So my sleep specialist started me on a new medication. I also have to get another sleep study done. 🙁 I see my GI dr. this Tuesday and my kidney dr. in a couple of weeks! Thank you for your continued prayers. ❤️ I’m working on writing a blog post that will tell more of what happened these last 2 months, but it may be a little while before it’s finished.. 😮💨
#suffering #painwithpurpose #mitochondrialdisease
Hi, friends,
I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak.
I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️
#painwithpurpose #suffering #mitochondrialdisease
2024 has started off with a crazy busy month filled with about 21 different appointments (wound care, physical therapy, hand therapy, PICC dressing changes, follow-ups wjth my PCP, mast cell specialist, pain doctor, surgeon + much more). 😵💫 But, I cancelled a few of those appointments due to the freezing rain!
I hope to post an update on the latest within the next couple weeks.. Thank you for continuing to pray for me, friends. ❤️
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#suffering #painwithpurpose #mitochondrialdisease #chronicillness
Happy New Year, friends. ✨ Swipe left to read my annual “reflections” blog post—God was truly by my side through all of the hard in 2023. ❤️
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#suffering #painwithpurpose #mitochondrialdisease #2023recap
| All of God’s Heaven is shouting His Praise,
‘Jesus has Come, the Ancient of Days!’
Born as a Babe to Save and Redeem;
‘Praise to the King’ is Forever our Theme. |
-Joni Eareckson Tada ❤️
Have a very Merry Christmas, friends. Excited to celebrate with my family on Saturday! 🥰🎄
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#christmas2023 #christmaslettering #christmasart
“Hark! The herald angels sing…” 🎶🎄✨
I’m so thankful for the Christmas season. A reminder of why Jesus came to the earth—to save us from our sins and ultimately end pain and suffering. ❤️ I’ve been having a nystagmus flare-up and droopier eyelids (from the mitochondrial disease) these last couple of days, and we don’t know why. It usually comes back when I’m extra exhausted or if something is brewing.. 😞 I’m thankful that my fam and I aren’t celebrating Christmas until the 30th (due to my brothers’ shift work)…that way there are several days until then where I can hopefully feel more “normal.” 🥲🤞🏻
#painwithpurpose #suffering #mitochondrialdisease #christmaslettering
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. 😢
*continued in comments ⤵️⤵️*
#painwithpurpose #suffering #mitochondrialdisease #christmaslettering
“…Born to set Thy people free;
From our fears and sins release us,
Let us find our rest in Thee.” 🎄🎶
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#christmasartwork #christmaslettering
I hope you had a wonderful Thanksgiving, friends. 🤗🧡 So much has happened this year, and saying it’s been “hard” is an understatement.
But God, in his mercy and compassion, has continually granted me the endurance to keep walking this path of suffering. I give thanks and praise to his name, for I could not do this life without him. ❤️
I also want to thank you all! Your caring prayers all these years have been such a blessing—I am always so encouraged by your love and kindness to me! 🥰
#thanksgiving2023 #suffering #painwithpurpose #psalm69
Hi, friends,
I just wanted to share how the appointment with my GI specialist went this past Monday. Thank you so much for praying about it. ❤️
After giving him an update on all that has happened, I’m happy to say that he is being very proactive about the high liver enzymes that are showing up on my blood tests the last 8+ weeks. I get 5 blood tests drawn every single week when my home health nurse comes to change my PICC line dressing. Well, my GI dr. ordered 10 additional blood tests on top of the original 5!! He also placed an order for an elastography scan which is a specialized ultrasound that grades how stiff the liver is—when there’s scar tissue, the liver gets stiff. The more scar tissue there is, the stiffer it becomes. Unfortunately, they’re booked out, so it can’t be done until next month..
I asked him if my high liver enzymes could be from not being able to take my Wilson’s Disease medication (the one that helps chelate copper out of my liver which has been back ordered for many months). In his opinion, he doesn’t think so because symptoms from Wilson’s slowly develop over time and not this fast. But, he did say my case is so complex and that I’m “one in a million.” 😞 These high liver enzymes could be from the Mitochondrial DNA Depletion Syndrome….it could be a reaction to a medication or from the antibiotics I took for the abdominal abscess…it could be from my mast cell disorder…or he could be wrong and it IS from Wilson’s…! He just doesn’t know yet, and since things are always so complicated with me, all these tests he ordered may or may not give an answer.. 😢
(continued in comments ⤵️⤵️)
#painwithpurpose #suffering #mitochondrialdisease
Dear friends,
Several weeks have passed since I last posted—mainly because so much has been happening in the world, our country…and here at home. 😔 It has weighed heavily on my heart. I’m so thankful that God is sovereign and that we can trust Him through these difficult times. ❤️
Ever since I had that abdominal abscess near my j-tube in August, I’ve been experiencing sharp, stabbing pain and inflammation in that area because the skin is raw and not happy. I had another follow-up with dermatology last week, and they referred me to the wound care clinic. Hopefully I can get an appointment soon and that they’re not booked out..
For the last 8+ weeks now, my liver enzymes have been elevated, and we’re wondering if that’s why I haven’t been feeling the greatest. My legs have been aching and burning terribly (it doesn’t feel like my usual small fiber neuropathy symptoms, though).
In addition to my Mitochondrial DNA Depletion Syndrome, I have Wilson’s Disease (a disorder that causes my liver to accumulate too much copper). This is usually well-managed by a medication I’m prescribed. A specialized form of zinc, it helps chelate (“get rid of”) copper out of my liver. BUT, it has sadly been back-ordered the last 3+ months. 😭 So we’re not sure if the high liver results are from not being able to take the medication….or if something new is happening. I have an appointment with my GI specialist on November 6th, and we’re praying he can figure out what’s going on.
(continued in comments ⬇️⬇️)
#painwithpurpose #psalmart
What a comfort this verse is. 🥺 So much has been happening (in the world, our country, here at home), and it gets overwhelming….but God HEARS our cries for help. He is not absent in the midst of our suffering. ❤️
#painwithpurpose #psalm18
Hi, friends,
It’s been a few weeks since I last checked in—I just wanted to post an update this evening because I’m so grateful for your continued prayers. ❤️
I did end up seeing the dermatologist at OHSU. That one incision has thankfully closed up, but it is leaving a big scar. 😕 Speaking of scars, I have a section of deep scar tissue from the loop drain the surgeons had to tunnel underneath the skin…it is very tender, so I’ve been trying to massage/rub it a lot to break up the hard rope-like scarring in my abdomen. Right next to my j-tube, there is a section of skin that the dermatologists are a little concerned about. It’s hard to explain, but it doesn’t look like healthy tissue. 😣 They prescribed a topical immunosuppressive medication and want to keep monitoring it so that it doesn’t turn into a serious skin condition that they wrote about in their chart notes. It can happen after an injury or trauma (like the abscess and bedside surgery I had). They didn’t tell me about this condition in person—I’m wondering if it’s because they don’t want to scare me? 😟 Could you please pray that this area near my j-tube will heal and not worsen?
Another issue going on is that I’ve been reacting terribly to my PICC line dressing site. My skin has a painful rash not just from the adhesive dressing but also from the cotton gauze and the PICC line itself (it’s never been this bad before). 😔 Random rashes/hives also pop up on my skin elsewhere. My port hasn’t been re-accessed yet—I’m scared the same thing will happen like before where the port site will develop a rash/welts and I’ll need a PICC again. 🥺 I have an appointment with my immunology specialist this coming Wednesday to talk about other treatments for my mast cell activation disorder (which is what’s causing me to have an allergic reaction to so many different things)..
(continued in comments ⬇️⬇️)
*Reposting—the IG algorithm is so bad that my insights highlighted my post wasn’t shown to any of my followers 🫠*
I had to see my surgeon yet again yesterday because the second incision that I’ve been “packing” with gauze hasn’t been healing unfortunately, and it is now shaped like a hole. 😭 I can see the layers of skin inside. 😥 She advised that I stop packing the incision now to see if that will help—but just a couple weeks before, I was instructed by her team that packing helps an incision to heal from the bottom to the top…in other words, if one stopped packing, the skin could close at the top and leave a hole underneath.. 😞
She said she doesn’t know why it’s not healing quickly like my other incision did, so I kinda feel like they’re not sure what to do.. If the hole is still not healing by the 22nd, I have a second opinion that day to see OHSU dermatology.
It’s been about 4 weeks now since the abdominal abscess started, so I’m sad that this whole ordeal hasn’t resolved still. 🥺 Would really appreciate your continued prayers.
My pastor shared the above verse with me recently, and it was so encouraging—I just had to hand letter it! What a beautiful reminder from Psalms that God does not hold back His compassion—He gives it to us and continually sustains us each day. ❤️
#painwithpurpose #suffering #mitochondrialdisease #scriptureart
Dear friends,
I just wanted to update you all since it’s been almost a week.. I saw my surgeon’s team once again yesterday—she said I’m her longest and most favorite patient. 😄 Hard to believe I started seeing her back in 2014. Thank you all for your prayers regarding this abscess. Praise God, my abdomen is looking much better. I still have to pack one incision (it’s still draining) but not the other which I’m so happy about! I’ll be finished with my antibiotics by this weekend. For those who like knowing medical stuff, my culture results came back—it showed the abscess was caused by E. Coli. 🤢
We’re not sure what’s going on now, but a few days ago, I started experiencing bad nystagmus (a neurological symptom that causes shaking eyeballs). 😥 Whenever this happens, it usually hints to something going on inside my body.. For example, I get nystagmus especially when I have sepsis or if I go into a “mitochondrial crash.” I’ve been exhausted from all that has happened lately, so I’d really appreciate your prayers that the nystagmus is simply because I’m fatigued and not from something more serious..
I’m so blessed by your love and caring support all these years! Having you all as “prayer warriors” truly helps me bear this ongoing burden. Thank you from the bottom of my heart. 🥰
#painwithpurpose #suffering #kk_polaroidart #timkeller
It’s been a really rough day (the whole past week actually). The abdominal abscess has not improved, despite having the drain in place and being on antibiotics. 😭 I’ve been in such horrendous pain all day and night—I’ve never experienced pain this bad in my life. When I had a stone stuck in the neck of my gallbladder back in 2021, that was rough but it didn’t even come close to this pain. 😔
Because I’ve been getting worse, my surgeon’s team saw me this afternoon, and they once again had to try and flush the pus out. 🥺 Instead of a drain, we’re now going to see if “packing” the incisions will help. If things don’t improve by the weekend, they’ll order a CT scan.
Could you please pray that my body can fight this infection and for the pain to lessen? I’m just not sleeping until after 7 AM every day because my heart rate’s been so high and I can’t get comfortable. 😢
I lettered this quote many many months ago, not knowing it would be so relevant this week. I’ve definitely been afraid and physically/emotionally exhausted, but I’m so thankful I’m not alone in my fear. God sees my pain and walks beside me during this unimaginable situation. 💜
#painwithpurpose #suffering #elisabethelliot
Yesterday morning was extremely hard and unexpected. I just can’t catch a break. 😭 I was supposed to be getting a simple PICC line placed, but instead, I had to go to the OHSU ED at 3:00 AM for debilitating abdominal pain. I was crying my eyes out from the 10 out of 10 pain, and I couldn’t get comfortable even with my home pain meds. Once there, I had an abdominal ultrasound done, and the doctors found a pretty big abscess at my j-tube site. 😔 My surgeon’s team had to come by and do bedside surgery to open it up and drain all the nasty fluid out—there was quite a bit of pus.. 😭 They decided to place a “loop drain,” so I have two incisions. 😞 One of the doctors told me he’s so glad I decided to come in because it could have gotten worse quickly. While there, the vascular access team was able to place my PICC line since my appointment at Providence Portland had to be canceled. This is my 3rd PICC line, my 3rd ED visit, my 3rd surgery—all in just 6 months. 😢😢 I just can’t wait for Heaven where there will be no more pain, tears, and suffering. ❤️
| 2 Corinthians 12:9-10
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. |
#kk_polaroidart #painwithpurpose #suffering #mitochondrialdisease
Dear friends,
I would really appreciate your prayers yet again with this latest turn of events.
To recap, in February, I had sepsis from a central line infection. A PICC line was placed because my Hickman central line had to be surgically removed due to the infection. I had that PICC until April 4th, the day of my port surgery. About a week later, my port incision severely reacted to the dermabond (surgical glue), so the doctors advised I use strong antibiotic/steroid ointment over the site, stop using my port, and get PICC line number 2. About a month later, my port site was healed well enough to get my PICC line pulled and my port re-accessed. Things were going great port-wise for about 2 months (I bet you can guess where this is going.. 😫).
But then, several weeks ago, my site developed a small welt/rash, so I was de-accessing a day early each week to put a bunch of Benadryl gel, cream, and Active Skin Repair on it. Last week, the home health nurse couldn’t access my port and get it to flush/draw blood (this has never happened before). It took 4 pokes to get the Huber needle in the right place. We’re not sure if it’s because of that (plus the hot weather temps and/or a mast cell activation flare-up), but my skin has gotten much worse and not better as time goes on. I’m not sleeping well because it itches SO much, and I’m scratching all day, every day, wanting to rip out my port needle. 😭
De-accessing one day a week to put a bunch of cream on has not been enough time to let my skin heal, so my GI specialist has decided it’s best to get PICC line number 3 temporarily placed. And I’m so bummed and sad about that, especially because my arms don’t tolerate PICC lines well—I have scarring all over my upper arms from reacting to the PICC tape. 😔 Could you please pray that my port site will heal completely and that my arm won’t itch terribly? My GI dr. marked this as “urgent” so it’s scheduled for this Sunday at 8:15 in the morning.
*This update is long, so you can read the rest of it at the link in my bio, if you’d like.*
Love you all. 🩵
#painwithpurpose #mitochondrialdisease #piccline #lysaterkeurst
Exactly 5 years ago today, my body went into septic shock about 12 hours after I had surgery to repair a torn hip labrum.
That was a very scary time as my kidneys started shutting down, my liver got hit with ischemic hepatitis (my liver labs were in the 1000s, and normal is below 50), my lungs partially collapsed, and much more. But despite all that, God gave my ICU doctors wisdom to treat my extremely low blood pressure quickly. Once my body was given norepinephrine, things miraculously turned around, and I was only in the hospital for 6 days. 😭❤️
I learned from that hard time to never forget what happens in the past and how God faithfully works all things for good, even when we feel weak and helpless. 🥲
This beautiful quote I hand lettered summarizes my thoughts perfectly! ✨
#painwithpurpose #suffering #mitochondrialdisease #septicshock
Hey friends,
I just posted an update on my blog about how my j-tube procedure went last month (link in bio)…I’m sorry it took so long to write it! Thank you all for your love and support.
P.S. This verse. ❤️❤️
#painwithpurpose #suffering #mitochondrialdisease #feedingtube
I’ve been dealing with yet another terrible status migrainosus episode, and they’re always so draining physically and mentally. 😔 If any of you are going through something difficult, too, I just wanted to share this beautiful verse I lettered a while back. Even in hard times, God is with us! ❤️
#painwithpurpose #suffering #mitochondrialdisease #handletteredtruth
When I had my port surgery in April, I mentioned that my surgeon was also going to replace my j-tube to a new one while I was under anesthesia. Sadly, this “new” tube has been causing a lot of abdominal pain, and the pain has gotten especially bad these last several days. The tube is most likely stuck in the abdominal wall (I had this same issue called “buried bumper syndrome” back in 2014). I didn’t post about this recent problem in my previous blog update because I was hoping it would resolve soon, but it hasn’t. 😢
It really hurts to walk, cough, laugh, sleep, etc. So my surgeon is squeezing me in for an urgent appointment on July 5th. Unfortunately, they have to order the tube I need, and it can take up to 5 weeks to be delivered. My surgeon’s team has been looking around to see if other clinics may possibly carry my tube size, but they haven’t found one, so the plan is to place a temporary tube. Tube replacements are incredibly painful (especially when my intestine is raw from the “buried bumper syndrome”). And since it will be done in clinic, I’ll have to be completely awake (which is why I try to coordinate these when I’m already under anesthesia). While I can’t wait for this bad tube to be removed, I’m also dreading it at the same time……I would really appreciate your prayers that I’ll be strong in the Lord and that the pain from the procedure won’t be unbearable. 🙁
When the correct tube comes in later, I hate that I’ll have to go through another tube change while awake. I know the Lord will be with me for these upcoming tube replacements, and I also remember His grace is sufficient. But I wish this debacle didn’t happen. 😭
Sometimes during painful procedures, tears automatically leak out of my eyes. And it makes me think of this beautiful verse from Psalm 9 that I hand lettered a while back. Thank you, Lord, for not forgetting the cry of the afflicted. ❤️
#painwithpurpose #suffering #psalms #mitochondrialdisease
One of my favorite verses from Romans. ❤️
#painwithpurpose #suffering #scriptureart
Wow 🔥
#suffering #painwithpurpose #joniearecksontada #shepaintstruth
Haven’t posted some of my art in a while, so here is a verse from Psalms that I lettered recently. 😊 May it be an encouragement to you!! 💙
#painwithpurpose #bibleart #shepaintstruth #watercolorlettering
The last several photos of the wedding signage I hand lettered along with a special picture at the end 🥰✨
Courtney is a true blessing to all of us, and we’re so happy she joined our family. I just love getting to call her my sister-in-law and friend. 💗💗
PC: @kaylasprint 😍
#weddingsignage #weddingcalligraphy #pnwwedding #weddingartist
Do you know that God says this in the Bible? 🥲 Isn’t that so very encouraging? 🩵💛
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#painwithpurpose #handletteredtruth #shepaintstruth #watercolorflorals
Hard to believe it’s already been almost 3 months since my brother’s wedding in February!
So excited to share a peek of the wedding signage and calligraphy that was completed by yours truly. 🤍 I’ll never forget what an honor and joy it was to hand letter everything for Curtis and Courtney’s special day! 🥰
There are a few more pics in portrait mode (that couldn’t be added here since these are landscape..), so stay tuned.. I thank God for the strength He gives to my hands because I just love to do custom lettering projects for the people who are dear to my heart! 🥲❤️
PC: @kaylasprint 😍
Signage Details:
• “save the date”
• wedding invitation
• reply card
• reception “order of events”
• chalk hot chocolate bar sign
#weddingsignage #weddingcalligraphy #weddingcalligrapher #pnwweddings
All throughout the Bible, I keep discovering more and more verses like this one—and I love how the Lord has such a heart for those who are suffering. What an encouragement to know this. 😭❤️
#painwithpurpose #suffering #biblelettering #shepaintstruth
| “I will walk by faith, even when I cannot see..” 🎶🤍 |
Hey friends,
I’d really appreciate your prayers as I’ve hit a bump in the road. 🙁 I mentioned that I had my port implant surgery last Tuesday the 4th…well, because of my mast cell activation disorder, I’m having a severe allergic reaction to the surgical glue they used. My incision site looks very very bad. 😭
OHSU dermatology got me in today for an urgent appointment. They’re concerned that my incision could be infected, so they swabbed the site to culture it and also prescribed very strong topical antibiotics and topical steroids. In the meantime, they said this will take several weeks to heal (and I can’t use my port 😭) so they placed an urgent order with OHSU Interventional Radiology (IR) to get another PICC line placed. So bummed about that because PICCs itch a ton. 😢
Please pray that any bacteria at the site won’t attach to my port (if that happens, I could get septic again and need surgery to remove the port)—trying to leave these concerns in the Lord’s hands and not worry. 🙁 Could you also pray that IR will be able to get me in and place a PICC line asap? Because I haven’t been able to use my port, that means I can’t infuse the IV meds/electrolytes that my body needs everyday.
Thank you, friends. 💗
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#suffering #painwithpurpose #walkbyfaith #mitochondrialdisease
He is RISEN 💛 Have a blessed Easter, friends!! 🌷
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#easter #resurrectionsunday #heisrisen #jesusisking #shepaintstruth #handletteredtruth
Waiting to head to the O.R. for my port implant surgery, j-tube replacement, and PICC line removal. This will be surgery #27. 😢 I’ve had to live with a port/central line since the beginning of 2015, and one of the risks of having a line is sepsis which I’ve experienced 5 separate times so far.. I dread/hate that there’s always the possibility of it happening again in the future, but that’s the reality of living with a mitochondrial disease. 😔
I know port surgeries aren’t major surgeries (which I’m thankful for!), but it’s still going under general anesthesia each time and having new incisions. So I’m sad that this latest surgery adds to my long list—I have numerous surgical scars all over my body (abdomen, hips, back, legs, chest, wrists, and much more). I’m not just sad, though…I’m thankful, too. I think about how each scar is a reminder to me of God’s grace and how He ALWAYS faithfully carries me through not only these surgeries but also the trials of life in general. I am so happy to have Him with me in this battle! It gets lonely living with a rare disease like mito, but Jesus is with me and for me. ❤️
Anyways, just wanted to share some thoughts while waiting. 🫶🏼 Every time I get put under anesthesia, it’s always fun for me to try and stay awake as long as possible! 🤓😉
| But I will hope continually and will praise you yet more and more. Psalm 71:14 💜 |
#livinghope #philwickham #painwithpurpose #floralartwork
{🪷S🌿P🌻R☘️I🌷N☔️G🌤️}
Never thought I’d be counting down the days till my port implant surgery in a few weeks, but it has been rough dealing with this PICC line in my arm on top of my other daily symptoms—I’m allergic to the plastic piece of the line, so it makes me want to yank the whole thing out. 😭 My amazing nurse tries her hardest to position the line away from the rash, but it’s a challenge. 😢
God is faithful, though, and He always pulls me through the hard days. I’m thankful, too, that I get my PICC adhesive dressing changed once a week. I love my nurse! 💜
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#suffering #painwithpurpose #mitochondrialdisease #piccline #mastcellactivation #godisfaithful
Love these beautiful @cityalight lyrics by their song “Yet Not I But Through Christ In Me.” 🤍🌿
#worship #suffering #painwithpurpose #shepaintstruth
I recently read this verse from Psalms and thought it was so encouraging—I wanted to letter it and share in case some of you are going through a rough time.
I was in a very low place in the hospital for sepsis a few weeks ago, crying every day from the severe pain and discomfort in my whole body, but God…. He saved me and pulled me out of it. He is with you and for you if you are in the midst of a hard trial! ❤️
#suffering #painwithpurpose #moderncalligraphy #floralwatercolor #psalms #shepaintstruth
Dear friends & family, this has been a long awaited day!! 🥰 I’m so very excited to announce the launch of my newly revamped Pain With Purpose website!! 😍
Working with Maisey.co these last several months has been an amazing experience, and I’m so thankful the Lord directed me to them! They made such a beautiful site for me—I absolutely love it and hope you do, too. 🥲❤️ To see the finished design, the link (painwithpurpose.com) is in my bio and in my IG stories. 🫶🏼
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#painwithpurpose #websitedesign #blog #mitochondrialdisease #chronicillness #raredisease #godisinthisstory
I just wanted to thank you all again for your loving care and support when I was in the hospital. 💚 I’m so blessed to have you all as prayer warriors (not only your prayers, but also your encouraging cards, comments, and DMs)! A little update—I have many doctor appointments ahead, including a consult with my general surgeon on March 1st to discuss the permanent port surgery.
P.S. Look at this beautiful arrangement of flowers—it’s so cheery!! Thank you so much, Auntie Karen and Uncle Gary. 😍 It sure brightened my day!! 🥰🌸
#suffering #painwithpurpose #mitochondrialdisease
Definitely wasn’t expecting that I’d be in the ER 3 days after my brother’s wedding, but here I am. 😢 I do want to thank God for the 17 month streak of no hospitalizations/surgeries—it was soo nice. 💚
Anyways, I’m here because I have a hole in my central line. 😭 This line was placed in my chest and enters my heart…I use it daily for very important IV infusions. Due to the hole, it has to be replaced asap because bacteria can enter it and cause a bloodstream infection. It might even be starting to get infected because I’m experiencing a lot of stabbing pain at the site. 🙁 I’m really dehydrated, too, and not feeling well. So I have to get admitted for surgery (not sure when that will be). I wish I didn’t need a central line—I’ve lived with one since 2014. 😔
My mom and sister are sick, so it’s just me and dad here. The hospital is packed, and they said the ED is basically the hospital now—they’ve remade halls into little stations with beds…that’s how full it is. 😞
Would appreciate your prayers, and I will keep you posted. 💚
#suffering #painwithpurpose #mitochondrialdisease
Hi friends, I just wanted to thank you all for your love and caring prayers/support after I last posted about the horrible status migrainosus episode I was in. Your prayers carried me through. ❤️
My neurologist put me back on the monoclonal antibody CGRP migraine injection I was receiving (it was stopped for a bit because of trialing a higher dose of another medication)…. Anyways, so thankful the pain is not a level 9 as often, but he still wants me to get that brain MRI as I started recently experiencing some visual disturbance in my left eye.
P.S. Just 2 weeks left until my brother’s wedding!! Soo exciting!! 😍
#kk_polaroidart #painwithpurpose
Hi friends, I would really appreciate your prayers. For the past 5 days or so, I’ve been in a horrible status migrainosus episode. 😔 The pain is a 9 (on a scale of 1-10)…it’s just soo bad. 😭 We’re not sure what’s going on and if it’s due to some medication changes.. So my Seattle headache neurologist adjusted my meds and also ordered another brain MRI (he said it would most likely be normal but wanted to be on the safe side). Could you pray that this migraine episode will break soon? I don’t want to feel like this on my brother’s upcoming wedding. 😢
Migraines in general are exhausting, but put it on top of mitochondrial disease, and it’s a rough combination…I’ve been so drowsy everyday because this episode is using up so much energy. 😭 Could you also pray that I won’t have a mito crash from all this bodily stress..
So thankful for you all—I love you. P.S. This is my new Pain with Purpose logo, and I can’t wait to share some exciting news. ❤️
#suffering #mitochondrialdisease #intractablemigraine #painwithpurpose
I love this quote by Randy Alcorn—soo encouraging. I can’t wait for the day when there will be no more pain and suffering. ❤️🥹
#painwithpurpose #kk_polaroidart
Dear friends, wishing you all a wonderful new year! 🥰🎉 I don’t know what 2023 will bring, but I’m thankful to have you along for the ride! ✨ Swipe left to see my family’s Christmas photo and read my annual “reflections” post. ❤️🤗
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#happynewyear #2023 #family #love #reflections #painwithpurpose
| The incarnation is the miracle of miracles; that He who is the Infinite should become an infant. ✨ Charles Spurgeon |
I hope you’re having a wonderful Christmas, friends. 🎄🥰 My family and I are excited to celebrate on the 29th as both of my brothers are on duty today. 💙
#christmasday #christmaslettering
“Glory to God in the highest, and on earth peace among those with whom he is pleased!”
Luke 2:14 ❤️💚
#christmaslettering #peaceonearth
I’ve been busy lettering all the signs for my brother’s upcoming wedding (which I absolutely love doing!! 💗), so I haven’t posted in a while.. But here’s a little piece I created a few days ago.. 🥰🎄
#oholynight #christmaslettering #christmastreeart
Happy Thanksgiving, friends!! 🥰 As I continue on this journey with Mitochondrial DNA Depletion Syndrome, I just wanted to say that I’m so grateful for YOU! ❤️ This trial weighs heavily on my shoulders, but you truly help hold it up. I am incredibly blessed by your love, support, and prayers!! 🤗
#givethanks #thanksgiving #painwithpurpose #godisgood
Love this beautiful quote. 💜 My mom’s dear friend from nursing school shared this with me a while back. 😍
| Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope… Romans 5:3-4 🤍 |
#kk_polaroidart #painwithpurpose #suffering #letteringart
| “Be strong and take heart, all you who hope in the Lord.” Psalms 31:24 |
It’s been almost a whole month since I last posted. Still dealing with horrible migraines every day, even with the treatment plan my headache neurologist put me on. I see him again next month. But in the meantime, I’m getting desperate and will be starting specialized acupuncture at the OHSU Comprehensive Pain Center in a couple weeks. This verse is a good reminder for me. I just want to say, if you’re going through something similar, put your hope in the Lord, friends. ❤️ He is for you and with you when all else fails!!
#takeheart #suffering #painwithpurpose #psalms
Starting my #kk_polaroidart series back up again! ☺️
This verse from the book of Isaiah is so very encouraging. 📖 Growing up, remember how comforting it was whenever we would hold our mom or dad’s hand? Well, in the same way, we don’t have to be afraid in times of fear or trial because the Lord holds our hand and helps us. ❤️
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#suffering #painwithpurpose #scriptureart
Hey friends,
If you’re interested, I wrote an update on my recent neurology appointment in Seattle.. The link is in my stories and in my bio. 🤗❤️
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#suffering #painwithpurpose #mitochondrialdisease #chronicpain
Recently, I had the absolute privilege and honor of hand lettering the “save the date” invite for my brother and future sister-in-law! 🥰 It was such a joy to create this for them! 🤍 Their engagement photo by @kaylasprint is so beautiful!! 😍
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#savethedate #wedding #love #family #calligraphy
Day 30 | Psalm 7:10
We reached the end of my “30 days of Psalms” series! ☺️🙌🏻 Yayy!!
This month 5 years ago, I started learning how to hand letter. 😍✍🏻 I took numerous online courses from many different teachers. On this continuous journey living with mitochondrial disease and my other diagnoses for 12 years now, I never imagined how therapeutic and encouraging it would be to letter Bible verses and uplifting quotes during these hard trials. In turn, I hope and pray that the art I’ve shared these past 5 years has blessed and encouraged all of you as well! ❤️❤️
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#kk_30daysofpsalms #30daysofbiblelettering
Day 29 | Psalm 56:4 🌸
#kk_30daysofpsalms #30daysofbiblelettering
Day 28 | Psalm 62:8 🤍
#kk_30daysofpsalms #30daysofbiblelettering
Day 27 | Psalm 59:10 🪴
We’re getting closer to the home stretch! Just 3 days left! ☺️
#kk_30daysofpsalms #30daysofbiblelettering
Day 26 | Psalm 121:5 💜
#kk_30daysofpsalms #30daysofbiblelettering
Day 25 | Psalm 116:5 😊🤍
#kk_30daysofpsalms #30daysofbiblelettering
Day 24 | Psalm 118:6 🌸
#kk_30daysofpsalms #30daysofbiblelettering
Day 23 | Psalm 94:22 🏞
#kk_30daysofpsalms #30daysofbiblelettering
Day 22 | Psalm 112:4 🌟
#kk_30daysofpsalms #30daysofbiblelettering
Day 21 | Psalm 138:8 ❤️
#kk_30daysofpsalms #30daysofbiblelettering
Day 20 | Psalm 147:6 🪷
#kk_30daysofpsalms #30daysofbiblelettering
Day 19 | Psalm 145:14 🍂
#kk_30daysofpsalms #30daysofbiblelettering
Day 18 | Psalm 41:1
I lettered this verse a while ago, not realizing that it would land on the first day of World Mitochondrial Disease Awareness 2022. 💚🌎🧬
When my symptoms first started, it took many longs months to finally get answers. My neuro metabolic specialist in San Diego diagnosed me with Mitochondrial DNA Depletion Syndrome, a disorder I had never heard of back then. I have symptoms in almost every body system because mitochondria are the power houses that provide energy (ATP) for all the organs. I have a central line for daily IV infusions and a feeding tube in my abdomen. I have had 20+ surgeries and countless scans, tests, hospital stays, appointments, and physical therapy. It truly is a full time job!
Like the verse above, I just wanted to share that God has faithfully delivered me through all the highs and lows of living with a progressive condition like mito which has no cure. And He continues to do so to this day. When I am weak (physically, mentally, or spiritually), He is strong! 💚💚
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#kk_30daysofpsalms #30daysofbiblelettering
Day 17 | Psalm 138:7 ✨
#kk_30daysofpsalms #30daysofbiblelettering
Day 16 | Psalm 55:16 🪴
#kk_30daysofpsalms #30daysofbiblelettering
Day 15 | Psalm 69:33 🐚
#kk_30daysofpsalms #30daysofbiblelettering
Day 14 | Psalm 41:3 🌺
#kk_30daysofpsalms #30daysofbiblelettering
Day 13 | Psalm 78:53 🤍
#kk_30daysofpsalms #30daysofbiblelettering
Day 12 | Psalm 4:3 🤍
#kk_30daysofpsalms #30daysofbiblelettering
Day 11 | Psalm 86:5 💐
#kk_30daysofpsalms #30daysofbiblelettering
Day 10 | Psalm 31:15 🌿
#kk_30daysofpsalms #30daysofbiblelettering
Day 9 | Psalm 68:19 ✨
#kk_30daysofpsalms #30daysofbiblelettering
Day 8 | Psalm 71:5 🍃
#kk_30daysofpsalms #30daysofbiblelettering
Day 7 | Psalm 18:28 🌸
#kk_30daysofpsalms #30daysofbiblelettering
Day 6 | Psalm 54:4 🤍
#kk_30daysofpsalms #30daysofbiblelettering
Day 5 | Psalm 91:4 🦅
#kk_30daysofpsalms #30daysofbiblelettering
Day 4 | Psalm 94:18 ❤️
#kk_30daysofpsalms #30daysofbiblelettering
Day 3 | Psalm 46:10 😊
#kk_30daysofpsalms #30daysofbiblelettering
Day 2 | Psalm 56:3 🤍
#kk_30daysofpsalms #30daysofbiblelettering
Hello, friends! These past several months, I worked on hand lettering 30 different verses of encouragement from the book of Psalms. ☺️
Since September has 30 days, I hope to post a verse every single day. Maybe some of you are going through a hard trial and feeling discouraged or fearful about something—I pray that the Lord will refresh your soul through this new series! ❤️🤗
#kk_30daysofPsalms #30daysofbiblelettering
Hi, friends,
I’m sorry it’s taken me a while to write a Seattle update on my neuro appointment. More than a week ago, our internet line accidentally got cut during construction—you never realize how much you use the internet until you don’t have it!! 😂
Regarding the “new” symptoms I’ve been experiencing since April (migraines nearly every day, sluggish pupils, buzzing in my ears, loss of ability for my right eyeball to look to the right, diminished peripheral vision, etc), my neurologist at UW basically thinks this is either a very atypical case of Pseudotumor Cerebri OR some progression of the mitochondrial disease. 😢 But, he doesn’t know enough about the former condition as he is a neuromuscular specialist. Pseudotumor Cerebri is a disorder which mimics the symptoms of an actual brain tumor, so he is referring me to a headache neurologist at UW who can rule it out and also try to get my migraines under control. My pain dr. here switched me to a different migraine injection back in May, but it’s not helping.
Anyways, I’m so thankful this headache neurologist is the best of the best and a Top Doctor in the Seattle Monthly. 😊 I’m just sad that we have to go back up to Seattle, though, as it’s always pretty exhausting. 😞 Not sure when I’ll be seeing her, but I will keep you updated..
This appointment was a little discouraging and disappointing, but I’m grateful the Lord always goes before me. He is in control and will keep giving me strength to deal with this. Aside from these horrible migraines and neuro symptoms, I realized that 2022 has been the best year yet as I haven’t had any long hospitalizations, ER visits, or mito crashes (next month marks 1 whole year since my last surgery, too—the emergency cholecystectomy)! I praise and thank God for this wonderful gift. ❤️
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#kk_polaroidart #mitochondrialdisease #suffering #painwithpurpose #ipadart #ipadlettering
I love this quote… 😍 Living with mitochondrial disease and my other diagnoses, I continually long for heaven where there will be no more pain…no more tears…no more suffering. I just can’t wait to see Jesus face to face. ❤️🥹
#suffering #mitochondrialdisease #painwithpurpose #everymomentholy #heaven
Love this quote—so beautiful. 🥹
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#kk_polaroidart #suffering #painwithpurpose #charlesspurgeon #encouragement
Such a beautiful and encouraging quote by Elisabeth Elliot. 🤍🤍
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#trustinthelord #encouragement #elisabethelliot #letteringart #scriptlettering
Hi, friends,
It’s been a little while since I shared a medical update. To recap, I’ve been experiencing buzzing in my right ear, and I lost the ability for my right eyeball to look to the right. I’ve also been dealing with nystagmus and migraines about every other day (sometimes every day). My pain doctor switched me to a different migraine injection, but so far, it’s not helping. I just haven’t been feeling well. 😔 After talking with my primary care doctor, we’re wondering if there’s a connection to all of these symptoms. In addition, he and my neuro-ophthalmologist noticed that my pupils are sluggish.
My PCP and I talked about a condition called Intracranial Hypertension. IH is due to high pressure in the brain which can cause many of these symptoms. So he ordered a brain MRI and an MRI of the IAC (internal auditory canal) which will be in a couple of weeks. He also wants me to see my neurologist at UW Medical Center up in Seattle. My neurologist is booked out until December (!!), but every Friday, he blocks off a certain amount of hours for urgent patients, so he is going to see me in the middle of August. I’m so thankful to God for this gift of an early appointment! We’re not sure if my neurologist knows enough about IH as he mainly specializes in neuromuscular disorders, but I know this is in God’s hands.
Thank you so much for praying for me! Love you all. ❤️
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#medicalupdate #mitochondrialdisease #suffering #painwithpurpose #ipadlettering #kk_polaroidart
Over the moon excited that my brother Curtis is now engaged to Courtney!! 😍💍 So thankful to God for bringing them together. ❤️
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#wallowamountains #engagementparty #love #weddingring #family
A beautiful prayer by @everymomentholy 🎶🎻❤️
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#prayer #liturgy #shepaintstruth #kk_polaroidart
We’re not sure what caused this change, but I’ve been dealing with so many migraines and headaches every day. 😔 I have an appointment with my pain dr. at OHSU next week because the head pain is just horrible. So this quote I lettered a while back means a lot to me..
Maybe you, too, are experiencing some physical or emotional pain…I hope this brings some encouragement. 🤍🤍
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#mitochondrialdisease #migraines #suffering #painwithpurpose #letteringquote
I know Good Friday/Easter was almost 2 months ago, but every day, I’m just so thankful to Jesus for His great love and for ultimately conquering sin and death. ❤️ I can’t wait for the day when there will be no more tears, no more pain, and no more suffering.. 🥹
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#suffering #painwithpurpose #jesus #shepaintstruth
In January, I read a book called Devotedly which is about Jim & Elisabeth Elliot’s letters to each other (I highly recommend it!). They were an incredible couple and on fire for the Lord. 🔥 I never knew that they both wrote poetry… 🤍📝
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#jimelliot #elisabethelliot #poetry #jesus #unsplash #sundayreflection
“Love bears all things, believes all things, hopes all things, endures all things.”
1 Corinthians 13:7 🤍
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#loveneverfails #shepaintstruth #heartart #biblecreative
Oh it was so special to spend several days in Sunriver, OR! Family truly is everything. 🥰
Some highlights of the trip:
▪️made yummy BBQ chicken pizza 🍕
▪️rode bikes and hiked 🚴🌲
▪️ate delicious peach pie that one of my former home health nurses baked 🥧
▪️watched fun shows in the theater room 📽
▪️hot-tubbing at the Cove 🫧
▪️read lots of books 📚
▪️hand lettered on my iPad ✍🏻
▪️played games and solved a murder mystery 🕵🏻♂️
▪️ate burgers and pizza at 10 Barrel Brewing Co 🍻
▪️and lastly, Lucy lived her best life!! 🐶🙌🏻
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#sunriveroregon #sunriverresort #familytrip #pnwlife #lovemyfamily #reel
Elisabeth Elliot’s life story is proof that this is 100% true. 🥹 I’m so thankful that my life with all of its health trials is part of God’s story, too. And He will soon redeem all things. ❤️❤️
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#beautyfromashes #suffering #painwithpurpose #shepaintstruth
Dear friends,
I’d really appreciate your prayers. The past few weeks, a bunch of different things have happened.
I wrote in the past how I have an eye muscle disorder called Progressive External Ophthalmoplegia which is from my mitochondrial dna depletion syndrome. In simple terms, it basically means eye muscle paralysis. For several years now, I slowly lost the movement of being able to move my eyeballs to look to the left, then up, then down.. But I was always able to look to the right.. Well, up until a few weeks ago. I suddenly noticed that I couldn’t look to the right well anymore which made me really sad. 😢 Now I have to turn my whole head to look different directions. I saw my neuro-ophthalmologist in December, and everything was stable then. So this happening suddenly was hard to realize… I see her again next month for her to take a look.
Around the same time, something started happening with the hearing in my right ear. It’s hard to explain, but it’s like there’s a “short circuit.” There’s an almost constant buzzing sound, and that keeps me up at night. 🙁 I have a full evaluation with the neuro-otology (ENT) clinic at OHSU at the end of May. Maybe this is just a benign thing, but regardless, it’s still something I’ve had to adjust to.. 😔
On top of that, the past few days, I’ve been feeling crummy with tachycardia, elevated liver enzymes, nystagmus, and a terrible headache every day. 😭 Not sure what’s going on, but I’d appreciate prayer that this will soon blow over, especially because my whole family and I are heading to Sunriver for several days at the end of next week. I don’t want this to be the start of a brewing “mito crash.” 😞
I love you all and am so grateful for your prayers. ❤️ I thank God for his comforting promises like the verse I lettered above. He is faithful.
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#suffering #mitochondrialdisease #painwithpurpose #scripturelettering
Such an encouraging verse. There have been some new health issues on top of my other problems (will try to share in a future post), but to know that God offers peace “which surpasses all understanding”—what a beautiful gift. ❤️
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#suffering #painwithpurpose #peaceofgod #scripturelettering
Happy National Siblings Day 🥰
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#siblinglove #family #nationalsiblingsday
| I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. |
John 16:33 ❤️🌎
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#takeheart #suffering #painwithpurpose #jesus
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