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!

me and my IV backpack

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

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

By Kerissa Lee • October 31, 2026
Dear friends, I just cannot believe it’s been more than 2 months since my last blog post! So much has happened, but most of it is very happy news!! ☺️ I saw my GI surgeon in September for my post-op appointment (check out my previous post if you missed what surgery I had in August). I’m all healed thankfully, although there is now a noticeable crater on my abdomen where my j-tube used to be. :( Scar tissue inside is what’s causing that, and she told me I need to be careful when carrying very heavy things because I could get a hernia in that spot. 😣 If that happened, she said she can easily repair it! I definitely don’t want another surgery, though! Aside from the short 4-day hospital stay I had in August for that abdominal surgery, I’m soo happy to share that the middle of November 2026 marks 2 WHOLE YEARS since I was last admitted to the hospital for a “mito crash!” I could cry from tears of happiness, and all praise and glory truly goes to God!! 🥹 My previous stretch of stable health lasted about 17 months (from September 2021 to February 2023), so I surpassed that which is simply amazing! Because my health has been doing so well, even more incredible news is that I got a part time job!! I found work through care.com since I LOVE babies and kids. I started occasionally taking care of a 6 month old baby girl—she’s so adorable!! I also sometimes take care of a 5 year old girl with her 3 year old brother. For both of those jobs, I’m just the backup (for example, when extended family can’t provide care). But, last week, another mom reached out on care.com asking if I could be her 2 daughters’ afternoon nanny every Monday—the oldest girl is 6 years old, and her little sister is almost 3 years old. It’s been so wonderful and fulfilling to be able to work. I never want to take for granted how much of a gift it is to have a job! 🥲 I do still have to rest my body on the days I don’t work because my muscle spasticity gets soo intense and painful. 😞 It feels like my back muscles just continually clench up and spasm. Very thankful for the muscle relaxant Baclofen which helps the extreme tightness! The chronic pain also worsens in my legs/back, and my hand tremors do, too (called minipolymyoclonus). Regardless of these symptoms, it makes me so happy and thankful to God for the ability to work! 💚 You might have noticed that I haven’t mentioned anything lately about my Pain With Purpose store. There are a bunch of reasons, but one of the biggest is that shipping has become more and more expensive which is a bummer. 😞 For the past year, whenever a customer places an order, I’ve been paying part of the shipping cost out of my own pocket because I wanted to keep the shipping fee low. I’ve also wanted to keep card prices low because I totally understand how expensive everything is in this economy. But in today’s digital world, a really nice card (at Papyrus, for example) could cost more than $9!! So charging only $2.75 for one of my cards on top of keeping the shipping fee low has been a challenge. After thinking about it a lot, I’ve made the decision to close my store—at least, for now! Next year, it’d be super cool to sell my items (cards, stickers, bookmarks, prints, and magnets) at something like a pop-up! 😊 So I will definitely be sure to keep you posted with any new shop updates! If you did place an order this past year, I wanted to say a big Thank You!! It meant so much to me, and I hope my cards were an encouragement. 🥰 I don't know what God has planned for my future regarding my health and everything else, but I just want to have faith and keep leaning on him for strength, through any future highs or lows. The Lord truly is faithful! Thank you so much for praying for me these past 16+ years. ❤️
By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. 
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1