Past Few Months.

Kerissa • November 3, 2019

Hey friends,

Just wanted to check in with a medical update.  Thank you so much for your continued prayers for me!  I’m so grateful.  The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord for strength.

At the end of July, I doubled the dosage of one of my nerve pain medications because the small fiber neuropathic pain in my hands and especially in both feet/legs has been so very bad. :’(  Doubling the dose helped the pain somewhat (a little relief was better than nothing), but then we found out that my blood sugars started spiking into the 170s and higher.

At first, we didn’t know what was causing the high sugars, and I had to get tested for diabetes.  I was so scared I was going to have to add another diagnosis to my long list..🙁

When we finally figured out the hyperglycemia was due to such a high dose of the nerve pain medication, that was a good news/bad news situation.  I was so thankful that I didn’t have diabetes, but, I had to go back down on that medication, and since then, the nerve pain has been so terrible.  It’s hard to focus, my feet BURN, and they feel like they’re constantly on fire.🙁 Haven’t been sleeping well, and the pain wakes me up.  My pain doctor at OHSU said that small fiber neuropathy is one of the most painful neuropathies, even more than diabetic peripheral neuropathy and others like that..

I’ve had to take more opioid pain medication, and I wish I didn’t have to.  I think I mentioned this before, but because of so many people overdosing on opioids in the US, the government is cracking down and making it harder and harder for people with chronic pain to have access to these pain medications.  And my pain doctors are unsure of what will happen down the road for people who actually need these pain meds.🙁

My pain dr. started me on a different nerve pain medication, but I have to increase it very slowly…and currently, this low dose isn’t helping unfortunately.

On top of all this, the vascular mass at the bottom of my right foot is making the pain even worse, and the surgery to have it removed got denied by my insurance.🙁 Not sure if it’s because they think this surgery is only for cosmetic purposes since my doctor is a plastic surgeon?🤷🏻‍♀️ So I’m still waiting for my insurance to authorize the surgery…they’re wanting to see more paperwork, etc..  And OHSU won’t let me schedule a surgery date until they know for sure that they will get paid for it.

My hypoparathyroidism is also worse (due to the mitochondrial disease)—my nails are chipping and I’m losing hair.  With hypoparathyroidism, my body is also not able to absorb calcium and phosphorus well, so this is causing my osteopenia to progress.  My endocrinologist doubled my calcium dosage and also wants more lab work done to see if I may need to take activated vitamin D (which is a prescription medication, not the vitamin D supplement that I also take)…  She ordered another DEXA scan that will be done in March to check the osteopenia, and if it looks even worse, then I have to start an IV bone infusion.  In the meantime, I did see my naturopath to see if anything else can be done for all of this, and he is having me take some homeopathic medicine.  He’s not sure if it will help due to the underlying mitochondrial disease, but it doesn’t hurt to try.

I did want to share some good news—my GI dr. recently stopped my IV nutrition!  Isn’t that awesome!?😊 When I doubled that nerve pain medication back in July, it made me gain weight (my pain dr. said that weight gain is a common side effect).  I gained 3 pounds.😄 So my GI doctor wants to see if my weight will hold.  I was receiving IV nutrition for almost 5 whole years.  It’s always considered a last resort because of the many problems it can cause…it’s especially bad for the liver..  Anyways, my GI dr. said it can take at least 2 months before we know if my weight can hold…  I will keep you posted!☺

While it is very nice to be off of the IV nutrition, I sadly can’t get rid of my central line because I still have to receive IV carnitine, magnesium, potassium, etc. for 8 hours every single night..  But, looking on the bright side, I’m so very grateful to God that I don’t have to be hooked up at all during the day (and lug an IV backpack around everywhere I move)!

Since I most likely won’t post another update this month, I just wanted to wish you a blessed (early) Thanksgiving.  You are all dear friends and family to me, and I love you!!  My heart is so thankful for you.❤

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
Share by: