Pain and Potassium Problems.

Kerissa • February 23, 2017

“I choose to believe that God is good even though He doesn’t heal me.  That when life goes wrong and I suffer, He is with me.  To join with the prophet to sing “He deals wondrously with us!” even when the wonderful life I expected doesn’t turn out the way I’d hoped.” |

He Speaks in the Silence

Hello everyone,

First off, for those who aren’t on Facebook, I just want to share with you some good news!!  Last week, I had a repeat venous duplex scan to check up on the DVT (blood clot) that formed in my subclavian and axillary veins.  Well, guess what?!  The clot is completely gone!!  Isn’t that amazing??🙂🙂🙂 All the glory goes to God!  Thank you all for praying for me during these last few weeks.  I’m blessed to have an army of prayer warriors by my side!

Last Thursday, I had a post-op surgery appointment.  Unfortunately, my jejunostomy feeding tube that was replaced while I was in the O.R. for my port surgery a few weeks ago was not the correct size.🙁 That is, they got the diameter correct but not length. *sigh*  So at this post-op appointment, the surgery resident replaced the feeding tube, and I had to be completely awake for it without any numbing medication. :'(  The procedure was extremely painful because my skin around the stoma (hole) was all raw and inflamed from the tube being the wrong size.  It was an 11 on a pain scale of 1-10.  Seriously!🙁 The tube is about a foot long, and I couldn’t breath because I could feel the doctor push the tube in inch by inch.  I’ve experienced a lot of painful procedures, but I think this tops it all.  I don’t know how I’ll bear another tube change in 9 or so months….I dread the thought of it!!  But I will try not to worry about the future..  I am reminded that God’s grace is sufficient.  It is enough.  For today….for the future.

Since November, I’ve had a lingering cough that I just can’t seem to kick.  If I have a lot of doctor appointments and I need to wake up “early,” my cough worsens when I’m tired and I have to use my inhaler more often.  Well in December, the cough was especially bad, and I started experiencing terrible upper right back pain then.  It hurt to breathe even!  And my physical therapists weren’t sure what was going on.  The pain was way worse than a muscle strain.  But the CT scan I had for that blood clot showed what was wrong.  It turns out that I fractured a rib….just from coughing!🙁 Wasn’t expecting that!  I’m glad for answers, though.  Based on the images, my rib is still healing..  My physical therapist said my bone mineral density is weak because of all my conditions..

We’re not sure what’s going on now, but I haven’t been feeling well.🙁 I get a very achy back that comes and goes, and it worsens to the point that I need one of my strong pain medications.  My blood potassium level has also been lower than my normal, so I told my nephrologist.  I believe she’s going to add more potassium to my daily IV magnesium infusion bags to see if that helps.  On top of that, I’ve had a severe, pounding headache the last few days with nausea, and we don’t know if this is all related with the back pain and potassium issues..

Or is the headache from my anemia, the nausea from all the pain, and the achy back from the low potassium?  Or, is my body just now having a rough time recovering from all that’s happened the last several weeks (DVT, port surgery, San Diego trip, feeding tube replacement, broken rib, cough, etc.) and I’m going through a “mito crash”?  I almost had to go to the ER yesterday…I felt so horrible, and I still do this evening.🙁 But I am seeing my PCP (my main PCP is on maternity leave) in evening clinic tomorrow, and I pray he can help..  Trying my hardest to avoid the ER!

Continuing to take it one day at a time.  I recently read something really encouraging in Joni Eareckson Tada’s newest devotional A Spectacle of Glory—“I may walk in pain, but I also walk in grace.”  So very true, and I remind myself of this often.🙂 She also writes, “For all the many times [the apostle Paul] was distressed by his weakness, he had the supporting grace of Christ…..grace always, always meets us at our point of pain!”

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
By Kerissa Lee November 9, 2024
“Be still, and know that I am God.” -Psalm 46:10 
Share by: