THIS IS MY STORY . . .

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Mar 24, 2017

“Sometimes when we get overwhelmed

we forget how big God is.”

-A.W. Tozer

Hey everyone,

I’m more than halfway through my 5 weeks of IV iron infusions….but I’m still very exhausted. 🙁  I woke up at 4 pm today because yesterday was so rough—my blood sodium and magnesium levels were pretty low which made me so weak.  My blood sugar yesterday also dropped…..my hands shook terribly from it, and I was nauseated.  Because I had to wake up early for an appointment, the mito fatigue made me not be able to empty my bladder numerous times throughout the day which was just plain agony….  TMI, but I’m just being real here. 🙁  This is just a little of what happened yesterday.

 

My achy back and headaches are sadly no better, either, and I still have to take my really strong pain medication every single day that my palliative care dr. prescribes.  I wish I didn’t have to because the side effects make my muscles heavy and everything gets so loud to my hearing. 🙁

 

I’m faithfully taking the CBD oil, too, but I haven’t noticed a single thing yet. 🙁  Will be having another phone appointment with the San Diego naturopathic physician sometime in the future to tell her how it’s going.

 

I had a follow-up with my palliative care doctor recently, and I learned that he is leaving OHSU in June after working there for 20 years!!  I’m so sad that he’s leaving, but I’m happy for him as well—he will be working for a very famous surgeon/writer in Boston.  His name is Atul Gawande, and I have read many of his books because they are so good!!  My palliative dr. will be the director of the hospice/palliative program there.  He wasn’t expecting to be chosen, but I’m not at all surprised because he is so very compassionate, reflective, and kind.  I get to see him one last time in May. 🙂

 

My monthly GI appointment was last week.  I lost weight, so I have to try and increase my tube feedings even more….he ordered a feeding pump backpack for me so that I can do tube feeds when I go out and not just do it when I’m at home.  If I can’t maintain my weight, my GI dr. said he’ll have to increase the calories in my IV nutrition when I see him again next month.

 

I also saw my pulmonary dr. afterwards.  He still thinks my chronic cough is upper airway-related versus lung-related, so he’s glad I see my ENT doc on April 10th.  My respiratory muscle strength is stable, so that’s a praise. 🙂

 

My kidney/bladder ultrasound that I had recently shows that the pressure from my neurogenic bladder causes my right kidney to get dilated.  I saw my urologist yesterday to follow-up on this, and she stated with great concern that I’m right on the edge for my bladder to stop working.. 🙁  This means I will have to have a major surgery done to protect my kidneys…..she doesn’t know exactly when I will need this.  I hope and pray it happens years from now or never at all..

 

After waiting 2 whole weeks, my bone density results finally came back.  Sadly, it shows that I have osteopenia (soft bones/bone loss)….no wonder I fractured a rib from coughing!  I’m only 24, and I have osteopenia…. 🙁  But it’s due to a number of factors.  It’s because I’m small, on IV nutrition, not active from the muscle weakness/fatigue, etc.  My PCP wants my GI dr. to greatly increase the calcium in my IV nutrition, for me to keep faithfully taking my vitamin D, and I also might need IV calcium infusions and/or liquid calcium through my j-tube.

 

Mitochondrial disease is simply horrible.  It affects too much. 🙁  I look so normal on the outside, and yet, on the inside…

 

Sometimes, everything seems so hopeless and gets more and more discouraging with bad news on top of bad news…..but Jesus is my Hope and Strength.  He will ALWAYS be!!  He knows what I’m going through.  He cares.  So I won’t let all this get me down!

 

John Calvin once wrote, “It is the word of God alone which can first and effectually cheer the heart of any sinner.  There is no true or solid peace to be enjoyed in the world except in the way of reposing upon the promises of God.”  So encouraging! 🙂

Post written byKerissa

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This post has 2 comments

  • Rosalie Baugh
    says:

    Kerissa, I keep admiring the photos that you attach to your blog, reading of the pain you are enduring, and struggling to trust God to meet your every need quite sufficiently even as He allows your suffering. I’m a bit concerned that things are even harder than ever since you haven’t written for almost a month. Of course I know that you are mighty busy just keeping all of your specialists in business! Seriously, how goes the struggle? Do you have any energy to create your beautiful jewelry or take extra photos? You are gifted at both!

    On Thursday morning, in Ireland, Rachel got up early. On Wednesday night, in Aurora, I stayed up late. We were able to talk for 2 hours before I collapsed in bed and she took off for breakfast. In a couple of days, her DTS leaves for a 6 week outreach in SE Asia. Also, April 28 is her birthday. I miss her so much! But she is growing and stretching, learning and adapting, Head knowledge has come easier for her than processing information into usable form, but she is learning to process faster, too.

    Steven came by this week to be on-site tech support. He advised me on a new phone purchase, one which he hopes will decrease my dependence on his assistance! So I baked cookies, and he came over to transfer my info from an android to an iPhone, hoping that I’ll be able to take it to an Apple shop for simple repairs or questions. They say that computers are “intuitive”, but I’m not convinced. Some parts of it seem straightforward, and others not so much.

    Robert has been out “swimming” in the orchard trying to get a layer of protection on the peach and cherry blooms. Warm, wet weather perpetuates mold and fungus, and the sprays that protect from these diseases can’t be applied in the rain and wind. Conundrum. The other day he spotted a mole scurrying across the grass–NOT underground, but moving above ground! I figure with the amount of standing water around the farm, even the varmits are flooded out. UGH!

    I am organizing a missions focus presentation for the Women’s Retreat coming up at Grace Baptist, and it is causing me to contact a variety of lovely ladies who minister in the most unique ways in their neighborhood. What a blessing just to know what God’s family is up to! I consider your blog to be the way in which you reach out to encourage and love others, and I am grateful to you. Please give my greetings to your family, and let me know what your current prayer needs are. Caring for you, Rosalie

    • Dear Mrs. Baugh,

      Thank you so much for writing! I’m sorry it took me so long to reply—I didn’t know that you wrote until I checked my blog “dashboard” last night.

      Anywho, yes, it has been extra rough as I had yet another ER visit/hospital stay at the beginning of April. 🙁 Lots of other things have been happening, too, but I hope to fill everyone in with a long overdue blog update later this week..

      I was able to make some jewelry recently and list some of the items in my Etsy shop! I hope to get back into it more if time and energy allows.. 🙂

      Thank you for always sharing about you and your family’s life! I’m glad you were able to talk to Rachel for 2 hours. 🙂 I bet you miss her terribly!

      I know I’ve said this before, but your emails and prayers are such a huge encouragement and blessing to me as I push through with God’s help! God is faithful.

      Love and hugs,
      Kerissa

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