Blood tests

Kerissa • July 14, 2016

Oscar Wilde wrote: “In this world there are only two tragedies. One is not getting what one wants, and the other is getting it.” To rephrase his thought, I suggest there are likewise only two joys. One is having God answer all your prayers; the other is not receiving the answer to all your prayers. I believe this because I have found that God knows my needs infinitely better than I know them. And He is utterly dependable, no matter which direction our circumstances take us. ~Joni Eareckson Tada

Hey friends,

Thank you for always checking in and reading my blog. It means a lot to me as I continue on this journey!

Can’t remember if I ever mentioned this, but I’ve been dealing with daily hives/itching for more than a year now. My eosinophils (a type of white blood cell that increases with inflammation/allergic reactions) have also been getting pretty high. My hematologist said we’ll keep monitoring this and run more tests if they get to a certain level.

But the hives/itching makes me so miserable, so in April or so of this year, I finally went to see an allergy/immunology doctor. She suspects I have a mast cell disorder, and she even mentioned that she sees this often with EDS and mito. I’m thankful for answers, but I do wish it wasn’t another condition to add to my ever growing list. I had lots of food allergy testing which shows that I react to pretty much all the foods I can eat (basically, eggs, dairy, oats, soy, etc.). All those foods are the only things I can really tolerate with my GI dysmotility. :/ These food reactions are related to my mast cells which are too hyper. So I was put on a mast cell stabilizer medication—it helped immensely! But only for a little while. Either its effectiveness decreased or the mast cell disorder has worsened…but I can’t increase the med dosage at this point because my insurance doesn’t cover compounded meds. So now I’m to trial some other things in addition to what I’m currently taking.

I’m blessed to have a knowledgeable doctor! She knows a lot about how mast cells are related to EDS and mito. I’d explain it here, but I don’t fully understand it myself. lol

I saw my new PCP at OHSU recently, and she is amazing! She exceeded my expectations and is so kind and compassionate. She has several pediatric patients with mito! She’s going to try to make my “coordination of care” even better. I see her again the beginning of August.

This past Monday, I saw my orthopaedic hip surgeon for follow-up. She discussed the surgery in more detail and drew us a diagram of the hip socket and labrum. She explained about the risks/potential complications with surgery and wrote down the plan for rehabilitation. I have Pre-op on July 29th, and I’ll be seeing the peri-operative medicine dr. instead of the nurse practitioner as originally scheduled since my case is so complex. After surgery, I’ll be sent home with a machine called Continuous Passive Motion. This machine will move my leg passively to prevent scar tissue formation in the joint and so that my hip/leg doesn’t get stiff. I’ll have to use it for 4-6 hours a day. :O

This past Sunday night, I had a bad episode of vomiting. That’s what happened the two weeks before I became septic in March. Praying another central line infection isn’t brewing. I saw my GI dr. today, and he ordered blood cultures to be drawn when my home health nurse comes tomorrow to draw my regular labs. My liver function lab tests have been increasing as well, and my platelets are the lowest they’ve ever been. Both can indicate infection, so we’ll see if the cultures grow.. Even if infection is ruled out, my GI dr. said something is going on regardless. I haven’t been feeling my normal this week.

P.S. My family and I had a wonderful time at the coast last week! We played lots of games, watched movies together, and put together a 750-piece Beauty and the Beast puzzle—the beach house was so nice! We also went to the beach a couple of times. And my physical therapist was so happy to hear that I tried walking a little on the sand, despite the muscle weakness and fatigue. My muscles got tired so fast, but it was nice to stand on the beach!!

me and my older sister

sunset in Pacific City

me and my IV backpack

From left to right: my older brother, me, my younger brother, and my older sister<3

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Difficult trial 🥺

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. ❤️

Progressive weakness 💔

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

Rough Road

By Kerissa Lee • November 9, 2024

“Be still, and know that I am God.” -Psalm 46:10