Reflections on this past year 2017
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
1 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
