Concerning issues.

Kerissa • Aug 10, 2017

“But I will call on God, and the Lord will rescue me.  Morning, noon, and night, I cry out in my distress, and the Lord hears my voice.  He ransoms me and keeps me safe from the battle waged against me…”

Psalm 55:16-18a

Hello friends,

Wow, where has the time gone??  I haven’t blogged here in almost a whole month!

It’s been a busy summer as my parents and I recently got back from Seattle.  They had a wedding to go to, so I wanted to come along so that I could see my pain dr. at UWMC.🙂

Oh it was so good to see him!  He will always be my favorite doctor, and when we said goodbye at the end of the appointment, he kissed me on the head and hugged me tight.  I miss him so very much and wish he still worked at OHSU.  But I’m so thankful he’s only one state away and that I can still see him at least once a year.🙂

me and my pain dr.🙂he’s the best!

He gave some good pain management recommendations for all the chronic pain, and hopefully, my pain dr. here or my palliative ANP can start me on one of them soon.  My next appointment with my local pain dr. at OHSU isn’t until the 29th, so the palliative care team is trying to get me in soon.

The pain has been really severe lately, and the hot weather we’ve been having definitely hasn’t helped.🙁 It causes my feet to get really swollen and red.  During the Seattle trip, my legs ached terribly and my feet burned more than usual because I was so exhausted from not sleeping well, needing to wake up “early,” etc.  When I’m tired, all the pain and other symptoms worsen.

I got my blood Carnitine levels back, and my mitochondrial geneticist in Pasadena said they’re quite low, so he wants me to have 2 grams of IV Carnitine added to each of my nightly TPN (IV nutrition) bags.  He said it may help some of the pain and weakness that I experience.  My GI dr. recently put in the order for this to be added.

I saw my physical medicine doctor, and he ordered a lightweight thoracic spinal brace for my achy back pain and muscle weakness.  It’s $800-$900 out of pocket (!!), so we’re trying to get it covered by my insurance.  It’s taking a long time because the company that offers these types of braces wants to see my medical records first.

My physical medicine dr. is really concerned about my osteopenia.  I shouldn’t have that at my age.🙁 So he wants me to work up to standing and weight-bearing a total of 3 hours a day by the end of the year.  I’m only awake 6-7 hours a day! :/  But he still wants me to try so that this doesn’t turn into osteoporosis at so young of an age..  I had a follow-up with my PCP, and she talked about something called SMART goals ( S pecific, M easurable, A ssignable, R ealistic, and T ime-based🙂 )…  So she told me to try working up to 2 hours first.

For the past 2 months or so, I’ve also been experiencing a new neurological symptom that often happens during the night, and it seems to be getting worse.🙁 So before ordering more tests, my neurologist first wants me to send her a video of what it looks like/when this happens.  Hopefully I’ll know soon what’s causing these neuro episodes..

On top of all this, something concerning has been going on with my sister.  I can’t share many details as we don’t know much ourselves, but her health has declined, starting 2 months ago (it doesn’t look like mitochondrial disease, though)..  It’s so hard to see my sister go through this new health trial (she’s been experiencing puzzling symptoms), and I keep praying that it’s nothing serious.🙁 But above all, I pray that my faith (and my family’s) will remain strong in spite of this concerning and stressful time.  She’s been having tests done, and on Friday, she sees a specialist.

I’ve been reflecting a lot on the verses shared above.  They just comfort me so.🙂 It’s encouraging to know that we can cry out to God in our distress any time of the day, whether it’s during a hard appointment, or when the pain is severe, or when we seem to be stuck in the unknown..  And through it all, the Lord hears our voice!  He doesn’t turn away but wants to hear about all our troubles/difficulties.  It’s especially encouraging and refreshing to know that the Lord will rescue us and keep us safe from any battle that comes our way.

This has just been a really hard journey, and it seems like the battle will never end.  But the Lord will always carry me and my family through this.  He is so faithful and will never forsake us.

By Kerissa Lee 23 Jan, 2024
Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️
By Kerissa Lee 01 Jan, 2024
"Let us know; let us press on to know the LORD; his going out is sure as the dawn; he will come to us as the showers, as the spring rains that water the earth." Hosea 6:3
By Kerissa Lee 11 Dec, 2023
"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him."  Elisabeth Elliot
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