Thrown a Curve Ball #2
Kerissa • August 10, 2013
What a week! To my great surprise and disappointment, I found out on Tuesday that the exome sequencing DNA test hasn’t even been started yet…
Here I thought the test was almost completed! Long story short, we found out that this certain laboratory in Massachusetts is out-of-network for our insurance. So ever since July 1st, the lab (together with my doctors) has been doing all they can to get this DNA test covered, appealing and fighting to show insurance how necessary this test is. I don’t know what’s going to happen, but I should hear by next week what they find out. I know it’s in the Lord’s hands. Thankfully, if getting the test through this lab doesn’t work out, there are always others.
On Wednesday, I heard back from that mitochondrial specialist in San Diego.
After thoroughly reviewing the referral and my records for 5 weeks, the dr. formed a plan. Before he decides whether to see me, he’d like me to get some extensive tests done first and then review the results:
1. another lumbar puncture (spinal tap) — I can’t even remember what it is he wants to check in the cerebrospinal fluid because it was too complicated..
2. whole exome sequencing — if the lab in Massachusetts doesn’t work out, he recommended one in Maryland.
3. repeat electromyogram and nerve conduction study
4. possible muscle biopsy
He sat by a fire of sevenfold heat,
As He looked at the precious ore,
And closer He bent with a searching gaze
As He heated it more and more.
He knew He had ore that could stand the test,
And He wanted the finest gold
To mold as a crown for the King to wear,
Set with gems with a price untold.
So He laid our gold in the burning fire,
Though we would have asked for delay,
And He watched the dross that we had not seen,
And it melted and passed away.
And the gold grew brighter and yet more bright,
But our eyes were so dim with tears,
We saw but the fire⎯not the Master’s hand,
And questioned with anxious fears.
Yet our gold shone out with a richer glow,
As it mirrored a Form above,
That bent o’er the fire, though unseen by us,
With a look of unspeakable love.
Should we think that it pleases His loving heart
To cause us a moment’s pain?
Not so! for He saw through the present cross
The joy of eternal gain.
So He waited there with a watchful eye,
With a love that is strong and sure,
And His gold did not suffer a bit more heat,
Than was needed to make it pure.
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. ❤️
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..
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1
