THIS IS MY STORY . . .

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Aug 9, 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 (Specific, Measurable, Assignable, Realistic, and Time-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.

Post written byKerissa

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This post has 6 comments

  • May the Lord continue to strengthen and comfort you and your family through this incredibly difficult time! You are such an example of faith to me!

  • Rosalie Baugh
    says:

    Hi Kerissa! Yes, I am encouraged when I read your words. Your basis of strength is most definitely the Lord our God, and He is sufficient for whatever He allows to comprise our days. My discomforts are minimal if I line them up next to yours, but perhaps my endurance and stamina through pain are also untested to the degree that yours have been……it’s hard to desire growth through pain, but a deep delight to note growth after it has occurred. God bless you as you continue to embrace the love He has for you in the midst of pain. I am praying for you this very moment!

    We are in the middle of peach season. Do fresh peaches sound good to you at all? I know that you can’t take a lot by mouth, but a bite or two of the succulent sweetness might put a smile on your face :o) I can send some your way with Steven…… Give our love to Karina and the rest of the family, Rosalie

    • Hi Mrs. Baugh,

      Yes, I’m so thankful for the Lord’s grace that is sufficient for each day.

      I love fresh peaches! The ones you gave recently were so soft, juicy, and sweet! But I don’t want you to go out of your way.. 🙂

      Hugs to you!

      Kerissa

  • Hi Kerissa: I am so impressed with the strength and perseverance you show. I recently read Colossians Chap. 1: which contains a brief statement (vs 11) about God’s will for us: “being strengthened with all power, according to his glorious might, for all endurance and patience with joy. I appreciate seeing how much patience and endurance that you show. I’m so glad for all of the people who support you, especially your parents, family, and the knowledgeable and caring doctors and other medical experts. I am praying for you now. I hope my family and I can see you again soon. If you need come to Seattle, your family is welcome to stay at our house. We’re moving in at the end of September and we’re about 15-20 mins from UWMC.
    In Christ,
    Mr. Eiles

    • Hi Mr. Eiles,

      Thank you so much for your encouraging message! I’m so thankful for your family’s prayers and support during this time. The Lord is so faithful.

      Thank you also for the kind invitation to stay at your house when we go up to Seattle in the future! 🙂 That is so thoughtful and caring of you all. That’s so nice you and your family live near UWMC! 🙂

      I miss all of you!

      Blessings,
      Kerissa

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