Reflections on this past year 2013

Kerissa • January 1, 2014

Another year is just about over!  As I look back on these past 12 months….2013 was filled with unexpected events and a lot of “firsts” (and “seconds”).  You could say this is my belated Christmas letter..😉  I’m sorry if this is a bit long….a lot happened this year. lol

In the middle of January , I came down with a 103.3 fever that wouldn’t break, even after taking Advil and Aleve that morning and the night before.
I took my first ambulance ride to the ER after the paramedics came to my house.  I remember hearing one paramedic saying, “She’s burning up.”  And still another told me, “I’m so glad your dad called us.”
My heart rate got very high (in the 150 bpm range)—the doctors had to quickly give me about 4 liters of IV fluids before things started calming down.  One resident dr. told me, “You’re a troublemaker!”😉
My labwork came back all out of whack, and I tested positive for Influenza B.  The flu hit my mom and sister as well, but it was the hardest on me because of the mitochondrial disease..
The flu caused a terrible CRPS flare-up
—the pain got so unbearable, and my feet swelled up.
🙁
Once I recovered from that ordeal, I had my first bilateral lumbar sympathetic block to calm the pain down.  After doing LSBs for 25 years, Dr. S told me that was his first time performing a bilateral one!
In April , my parents, sister, and I traveled to Cincinnati, Ohio for the first time where I saw Genetics, Neurology, and Pain at Cincinnati Children’s Hospital Medical Center!  
We spent a week there, and this is when the doctors really started suspecting mitochondrial disease. 

Met this precious little guy at the RMH!  He was getting ready to have a bone marrow transplant!  I know I shared this pic before, but it’s one of my favorites!🙂
On May 21st, my 90 year old grandma (my dad’s mom) passed away suddenly due to a suspected pulmonary embolism. :'(  That was so hard, and it was the first time my siblings and I really experienced the death of a grandparent (my oldest brother was only 6 months when our grandpa passed away from a heart attack).
A lot happened in July.  My 89 year old grandpa (my mom’s dad) passed away from kidney failure. :'(  We weren’t expecting that, also, because he was given up to 6 months to live.  As you can imagine, that was so difficult for all of us to go through two close family deaths in not even two months.  We all miss our grandparents terribly.
 I’m not sure if it was because of the stress, but that month, I began experiencing chronic GI issues for the first time (which are still going on today).
In July as well, my geneticist in Cincy ordered nuclear mitochondrial exome sequencing.  That was my first extensive genetic test which took about 6 weeks to be completed. 
 
But before the test could get started, our insurance denied the exome sequencing because it was out-of-network.  The lab had to go through the appeals process which took an incredibly long 5 weeks!  But thanks be to God and the amazing laboratory Courtagen Diagnostics, the testing did get appealed!  And our insurance agreed to cover the whole cost!🙂
In August , a caring and thoughtful family in our church let my family use their beautiful beach house for a whole week!!!  That trip to the coast was much needed and such a blessing.
Our view from the beach house.🙂
Soon after my 21st birthday in October , I had a second lumbar puncture (spinal tap) to check certain lab values at the request of Dr. H, a mitochondrial specialist in San Diego.  I’m still currently trying to get in to see him, but this again may take several months..
Beginning in November , I started having difficulty swallowing (but not from a sore throat) and severe esophagus pain.  Eating brought extreme pain, and for more than a week, it felt like food was stuck in my esophagus.  For the second time this year, I had to take another trip to the ER.  The doctors had me stay overnight in the observation unit as they tried getting to the bottom of this.  I had a test done called an esophagram, but this revealed nothing.  They wanted me to get an upper scope of my GI tract, but they referred all of this to my GI specialist here in Oregon and the motility dr. in Cincinnati.
December 1st-14th, my parents and I traveled a second time to Cincinnati Children’s Hospital Medical Center.  I was admitted to the GI unit of the hospital for tests that could only be done inpatient.
All of this was for the GI manometry testing!
And this is what it looked like on the computer screen.🙂

I also had a lot of outpatient tests/appointments with cardiology, orthopaedics, pulmonology, genetics, and neurology.  Based on my genetic results, the doctors also think that I have a rare genetic neuromuscular disorder called Congenital Myasthenic Syndrome.  This is on top of the mitochondrial disease..  They already started me on a cholinesterase inhibitor drug to slow the progression.

This has been a tough year for all of us, but your prayers/support and the Lord’s grace has sustained us through it all!🙂

I don’t know what 2014 will bring….maybe it will be an easier year….or maybe there will be new trials and tests.  But this I know 100%: my Lord and Savior is always always good, sovereign, steadfast, and faithful!

“Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.  But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.”
I Peter 4:12-13

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.” 😥 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. 🥺 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.. 😔 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? 🥹 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. 😔 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. ❤️
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
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