2025

The Lord will fulfill His purpose for me. Psalm 138:8

By Kerissa Lee February 27, 2025
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” πŸ˜₯ I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😒 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😒 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. πŸ₯Ί Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. πŸ˜” Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? πŸ₯Ή He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❀️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom
By Kerissa Lee January 21, 2025
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. πŸ˜” 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.). πŸ₯Ί 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. πŸ₯Ί 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. πŸ˜₯ Thank you so much for praying for me all these years. ❀️
By Kerissa Lee December 13, 2024
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
By Kerissa Lee November 9, 2024
“Be still, and know that I am God.” -Psalm 46:10 ο»Ώ
By Kerissa Lee October 23, 2024
There is hope in every trial For I can trust the Lord He will turn my heart towards Him And help me bear the thorn So, in faith, I follow Jesus On the road not understood For I know that He is working For His glory and my good -CityAlight
By Kerissa Lee September 14, 2024
"Weeping may tarry for the night, but joy comes with the morning." Psalm 30:5
By Kerissa Lee August 24, 2024
"Share in suffering as a good soldier of Christ Jesus." 2 Timothy 2:3 ο»Ώ
By Kerissa Lee July 6, 2024
Cast your burden on the Lord, and he will sustain you. -Psalm 55:22-
By Kerissa Lee June 1, 2024
Hello, friends, It’s hard to believe it’s been almost 3 whole months since the day I came home from the hospital. I’m so grateful to God for each day here. It hasn’t been the easiest road since discharge (which I’ll tell you about below), but it truly has been a gift simply staying home. πŸ₯² At some of the recent follow-up appointments with my doctors, we discussed how this is the 6th time I’ve experienced sepsis in less than 10 years. 😒 Yes, the body does recover from each episode of sepsis, but as my GI specialist explained, organs become more damaged in the long run as time goes on.. Each bout seems to get harder and harder to fight, and I dread the next time it happens. πŸ˜” It’s hard not to think about all the “if only” scenarios. For example, if only I didn’t have renal magnesium wasting, then I wouldn’t need a port. Or, if only I didn’t have a port, then I wouldn’t experience blood infections/sepsis. Or, if only I didn’t need a port, then I could have a spinal cord stimulator implant again for the chronic pain and get off all the pain medications. But, if all those “ifs” came true, I don’t think I would lean on God as much! Psalm 119:71 says, “It is good for me that I was afflicted, that I might learn your statutes.” I love what Joni Eareckson Tada wrote in one of her books regarding difficult times, “Suffering has a way of heaving you beyond the shallows of life where your faith feels ankle-deep. It casts you out into the fathomless depths of God.” ❀️ I recently saw my nephrologist (kidney doctor). She ordered a bunch of tests to check up on the renal magnesium wasting. My body doesn’t hold onto magnesium well….that is, my kidneys excrete too much magnesium which is why I need chronic IV access to receive infusions of high dose magnesium. Anyways, the results of these recent tests show that it hasn’t improved at all. It also shows a decrease in kidney function which she says we’ll need to continue monitoring. My hand tremors have sadly worsened since my hospital stay—it’s challenging to do any hand lettering/calligraphy now (which always requires very controlled fine motor skills). In fact, all of my art that I’ve posted with each of these last several blog updates are older pieces that I’ve never shared before.. The tremors make it hard to hand letter any new pieces. My hand therapist referred me to a neurology-focused occupational therapist at OHSU which I’ve been waiting many weeks for. My first appointment is finally coming up on June 5th, and I pray that she will have some solutions to help me keep doing my favorite hobby. I’d appreciate prayers for this issue! I definitely don’t want to lose my lettering skills. πŸ₯Ί Speaking of neurology, I’ve also been waiting many months to see my new neurologist. I had an appointment scheduled with him on June 13th, but I just found out he will be out of the clinic that day. So now I’ll be seeing his colleague, but that appointment isn’t until July.. Same with my EMG (electromyography) study. One of my doctors ordered this specific test to check the signals of my nerves/muscles, and it was scheduled for the end of June. But the physical medicine specialist who will be doing the EMG will also be “out of the clinic,” so now the test got pushed out to the end of July. I wish doctors didn’t reschedule out of the blue. 😞 It’s hard not to get frustrated, but I have to remember that even the timing of each appointment/test is in God’s hands. ❀️ I have a bilateral lumbar sympathetic nerve block procedure scheduled in the middle of June because the deep leg pain has worsened which makes it so hard to bear. The pain was not bad when I got discharged from the hospital in March, but then it started ramping up in April. My last nerve block was done several years ago, and the pain relief only lasted half a day or so. Could you pray that this upcoming nerve block will be effective and long-acting? Thank you so much, friends. I’m so grateful for you! 🫢🏻
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