THIS IS MY STORY . . .

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Jul 2, 2018

Hey friends,

 

I got my MRI arthrogram results, and it shows that I do have a right hip labral tear. 🙁  So now I’m waiting to hear from the surgery scheduler to schedule orthopedic hip surgery.  Have to get insurance authorization first.  Can’t believe I have to go through the same process once again—-hip surgery was incredibly rough…. 🙁  I couldn’t bear weight on my affected leg for 2+ weeks, I had to use crutches, physical therapy twice a week was so very intense to try and prevent scar tissue from forming in the joint, and so much more…

 

Once I do have a surgery date, my GI dr. is going to contact my general surgeon so that my j-tube can also be changed to a new one while I’m under anesthesia.  My current tube has been causing a lot of problems and pain.

 

My sleep specialist recently emailed me.  He explained how I NEED to be using my adaptive-servo ventilator during ALL hours of sleep because my complex sleep apnea (central and obstructive) is so bad.  He told me that I’m only initiating my own breaths about 40% of the time…  That means the ASV device is breathing for me more than I’m breathing on my own. 🙁  Trying now to work up to using it much longer than I’m used to….it’s just rough because of so many issues keeping me awake/waking me up.

 

I saw my pain doctor, and I was switched to a different opioid pain medication because my body was becoming tolerant to the one I was taking.  Found out some concerning, bad news regarding opioids. 🙁  The government (federal and state) is “cracking down”on opioids and making laws that are even more strict.  My pain dr. said that down the road, there will be no more morphine, oxycodone, hydrocodone, etc. 😰  She explained how “this” is not good.  The government thinks they’re taking positive steps to prevent overdoses, etc., but actually, my pain dr. said there has been an increase in heroin deaths that correlates with this decrease in opioids.  All this happening with opioids is very concerning for those with chronic pain. 🙁  I don’t know what’s going to happen in the future regarding access to pain medications.  It’s scary. 🙁  I have tried a ton of supplements and non-opioid pain meds (I even still take two different non-opioids), but none of those help much.  Before I started taking opioid pain medication, I used to have to go to the ER numerous times for severe pain I was having.  At the end of August, I do see my other pain dr. who works at UWMC in Seattle, and I hope to talk about all this…

 

I also recently saw my GI specialist.  Found out some more discouraging news on top of all the above.  In order to get off of IV nutrition (TPN), I would need to do 4 cans of tube feeding formula every day. 🙁  4 cans is the equivalent of what I receive in TPN.  I can only tolerate 1 can a day.  So it just seems like a lost cause. :’(  But, my GI dr. said that I should just take the first step.  And that would be, doing 1 can a day for the next 30 days (until my next GI appointment).

 

My blood counts have also dropped recently, so I’m now anemic.  I’ve been even more exhausted than usual—-I woke up at 4:30 pm this past Saturday…I hate that I have to sleep so much and that there’s hardly any day left by the time I wake up. 🙁  So in addition to my weekly labs that I get drawn, my GI dr. also added a ton of other labs to be drawn.

 

He got some of the results back, and a lot are abnormal.  I’m very low in iron and ferritin.  I’m low on vitamin D even though I take a D supplement.  My vitamin B12 level was extremely high even though I don’t take a B12 supplement (mine was >2000 and normal is under 900).  My dr. is out of the office for a couple of days, so still waiting to hear what to do about all this.  He does want me to try a different IV iron that only requires 2 weeks of infusions vs. the usual 5 weeks, so that will be nice. 🙂

 

Soo, a lot to process…  A lot of discouraging news…  But I will keep persevering.  Lately, I’ve been reflecting on this verse in the book of Job: “Though He slay me, yet will I hope in Him” (Job 13:15).  I have so many things going “against” me, and it just gets harder and harder, but….my hope is and will always remain in Christ alone.  This recent quote by Glenna Marshall was so thought-provoking: “Hope that is anchored in Christ doesn’t disappoint because it cannot be plucked from our hands the way that health, possessions, normalcy, and relationships can. Hope in Christ is eternally secure.”

 

I lettered the above quote by Joni Eareckson Tada on the iPad a while back, and those words are also so true…. ❤️  God’s ways are higher than mine!

 

P.S. I head to San Diego in exactly two weeks!  Can’t wait. 🙂  Hope to get an update from my mito doctor about the phase 3 mitochondrial drug trial going on.

 

P.P.S. At the end of July, I am going to my first ever watercolor lettering + florals workshop in Portland, OR! 🙂  I’m so so excited!!  There will be two very famous hand lettering artists there—-one from Portland and one from California!

Post written byKerissa

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This post has 2 comments

  • Rosalie Baugh
    says:

    Hi Kerissa!
    It’s always good to read your updates, even if you do title it “Discouraging news”……your faith in the One Who allows this leaves me with hope rather than discouragement. I looked up ASV devices and learned a bit. You do a great job of learning and explaining the medical terms and explanations that apply to your long list of conditions, not something that most patients are willing to do even when faced with 10% of the diagnoses attached to your name! I agree with you that the momentum intended to curb the opiate epidemic is harmful for the small percentage of our population that truly need the meds. Hopefully the pendulum will not swing too far for too long before they restore balance and meet the needs of people in chronic pain. Pain is awful, exhausting, depressing, and should be treated!!! One of these days my garden is going to produce in such quantities that we need to find good homes for produce, and your family is certainly on my list. I’m not at all sure that the food I’m growing will provide the exact nutrients that your body seems to be lacking, but it sure can’t hurt. I’ll be sending HUGS along with every fruit and vegetable, and will continue in prayer for you as well. My biggest prayers for you are that you will find comfort from God that no doctor or mom or friend can provide, and that you will be able to rest well when you are in bed trying to sleep. Love you, Rosalie

    • Dear Mrs. Baugh,
      For some reason, I never get notifications whenever you send a message.:( So I didn’t see this one until last night.
      Anyways, thank you so very much for your caring words! They always lift me up and encourage me. 🙂
      The cherries and blueberries that you gave when my mom saw you last were so so yummy! You are just so thoughtful to share your produce with us!
      My parents and I arrived in San Diego this morning! My appointment with my mitochondrial specialist is tomorrow. 🙂
      Hugs,
      Kerissa

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