Reflections on this past year 2015

Kerissa • January 1, 2016

This year alone, I had a total of:

  • 51 doctor appointments
  • 21 physical therapy and occupational therapy appointments
  • 5 MRIs (brain, cervical spine, thoracic spine, foot, and heart)
  • 2 more surgeries (central line placement and liver biopsy) which makes a total of 9 so far
  • 2 overnight hospital admissions
  • 1 blood clot in my right cephalic vein
  • 14 days of blood thinner injections
  • 52 home care nurse visits
  • 52 central line dressing site changes
  • 3 sleep studies which showed worsening sleep apnea
  • 1 skin biopsy
  • 2 trips to San Diego to see my mitochondrial specialist in January and July
  • 2 genetic tests (whole exome sequencing and a periodic fever syndrome panel)
  • More than 150 tubes of blood drawn (thankfully, most of the blood draws were through my central line, so I didn’t have to get poked for all of them
  • 5 weeks of IV iron infusions for iron deficiency anemia
  • 2 ER visits
  • 2 electroencephalograms in June and August
  • 1 pulmonary function test
  • 1 modified barium swallow study/esophagram which showed esophageal dysmotility
  • 2 EKGs
  • 2 new medical diagnoses (Mitochondrial DNA Depletion Syndrome and Wilson’s Disease)
  • 1 jejunostomy feeding tube infection
  • 2 multi-organ abdominal ultrasounds and 1 venous duplex ultrasound study
  • 4 “24-hour” urine tests to check histamine and copper
  • And more than 365 hook-ups to IV nutrition and IV fluids

I look at all these numbers, and I’m humbled by God’s grace—I truly couldn’t have made it through another hard year without the Lord’s help.  He has been my Rock!  I’m reminded of the verse in 2 Corinthians 12— But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  I was weak many times this past year, but the Lord made me strong (2 Cor. 12:10).

2016 is upon us…  It’s always a little hard when a new year begins because of the unknown, but I know the Lord will give me courage to face whatever comes next!  Plus, He blesses me with such loving and supportive friends and family.  Thank you for staying on this journey with me!  I couldn’t do this without you!

Happy new year, friends.  May we hold fast to the Lord and trust Him in everything these next 12 months—He is faithful!!

jeremy-camp-quote

Saw this quote recently and wanted to share. Perfect as we begin 2016!

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!! πŸ₯Ή 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! πŸ₯² 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! πŸ’š 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. πŸ₯° 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! πŸ’š 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! πŸ₯Ή 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)! πŸ₯° 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.. ο»Ώ
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1