THIS IS MY STORY . . .

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Jan 9, 2018

Dear friends,

 

Happy New Year!!!  I’m very late in posting my annual end-of-the-year “reflections” post, but better late than never, right?! 😉  I didn’t get to post this on December 31st like I usually do or even at the very beginning of this year because I was feeling pretty sick from a terrible feeding tube infection (more on that below)….right after that, I caught a bad virus, and both of those together really took its toll.. 🙁

 

2017 was the hardest year health-wise, and I know I said the same thing in 2016’s “reflections” post…but each year really does get harder and harder. 🙁

 

In 2017, I had….

 

75 doctor appointments

39 physical therapy and swallowing therapy appointments

56 home health nurse visits and 56 port/central line dressing site changes

1 trip to San Diego in January to see my mitochondrial disease specialist, 1 trip to Pasadena, CA in May to see my new mitochondrial geneticist after waiting a whole year to see him, and 1 trip to Seattle in August to see my pain dr. at the UWMC

5 weeks of IV iron infusions

1 blood clot

port placement surgery

2 venous duplex ultrasound scans, 1 kidney/bladder ultrasound (found out my right kidney gets dilated due to my neurogenic bladder), and 1 DEXA scan (got diagnosed with osteopenia)

1 chest CT scan

5 chest, abdominal, and hip x-rays

3 hospital stays

1 ambulance ride

5 ER visits

Sepsis from a central-line associated bloodstream infection (CLABSI) due to methicillin-resistant staphylococcus epidermidis (was admitted to the hospital for 9 long days)

1 port removal surgery and 1 central line placement surgery

1 EEG and 1 sleep study (diagnosed with central sleep apnea and I now have to use an adaptive-servo ventilator at night)

1 pulmonary function test

2 separate times my jejunostomy feeding tube got accidentally pulled out

1 horrible feeding tube infection that required incision and drainage for an abscess that formed

4 different IV and oral antibiotics (Vancomycin, Zosyn, Cephalexin, and Augmentin) given throughout the year for all the numerous infections

1 bilateral lumbar sympathetic nerve block

 

In 2017, it was really hard to go through all of the above and much more that I didn’t list (for example, numerous episodes of vomiting throughout the year due to my gastroparesis and needing daily pain medication since February for the worsening chronic pain), but also, 2017 was a hard year for me emotionally.  Many times, I cried, got tearful, or sad….  It was funny, when I had several episodes of crying in such a short time, I thought that was odd, so I looked up the side effects of one new medication I started, and sure enough, “tearfulness” and things like “emotional instability” were listed. 😉  So that was partly why I became more tearful, etc….but….it was also because living with mito day in and day out is just plain hard.  Many times, I would forget what day it was (I still do sometimes) because, honestly, every day is pretty much the same to me.  If I don’t have appointments, I wake up around 3 pm, hook up to IV fluids with magnesium at 4 pm, eat dinner at 5 pm, have a little time in the evening to watch a movie or something, and then I would once again hook up to my IV nutrition at night, and go to bed at 9:30-10 pm.  And then the day would start all over again.  I didn’t like (and still don’t) that I can only be awake 6-7 hours a day due to my bad mitochondrial DNA depletion….my body is getting depleted of mitochondria (“energy makers”) as time goes on.. 🙁

 

It was difficult seeing so many young adults my age living “the dream” and getting to do what they’ve always wanted to do….even if it was just getting their driver’s license, a job, or going to college—all things that I haven’t been able to do still.

 

So last year, the Lord taught me a lot about finding contentment not in earthly things but in Him alone.  I’ve learned that only He can satisfy the soul.  Because….you must admit, the excitement of driving wears off, a job often becomes mundane, etc. 😉

 

The Lord not only taught me about contentment but also about trust.  I continue to remind myself that He chose me for this path.  I don’t know why I’m the only one in my family who got the “full-blown” mitochondrial disease, but even before I was born, He knew me.  And I was “fearfully and wonderfully” made (Psalm 139).  I just need to trust Him fully with this path I’m on.

 

Other than a major surgery looming in the near future, I don’t know what other hard things will happen in 2018..  But Joni Eareckson Tada said it beautifully, …I’m not going to be fearful about what I have no grace available for yet.  I’ve got to take a deep breath and trust my Savior will help me…

 

Thank you, friends, for walking with me on this journey. 🙂  I continue to be so grateful for your faithful prayers and support!

 

I thought this poem from Streams in the Desert was the perfect ending for my first post in 2018. 🙂

 

 

“He leads us on by paths we did not know;

Upward He leads us, though our steps be slow,

Though oft we faint and falter on the way,

Though storms and darkness oft obscure the day;

Yet when the clouds are gone,

We know He leads us on.

He leads us on through all the unquiet years;

Past all our dreamland hopes, and doubts and fears,

He guides our steps, through all the tangled maze

Of losses, sorrows, and o’er clouded days;

We know His will is done;

And still He leads us on.”

~by N. L. Zinzendorf

 

 

Post written byKerissa

Check out my previous posts below

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Reflections on this past year 2018 ...
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Septic Shock and the ICU ...
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