An Update to My Ever-Changing Situation

More than likely, I now have ALS.

There’s no better way than to just say it. Add the condition to my list of health issues although this one could be the one that’s too much.

Well, June 12, 2019 was my last post. Today is September 14, 2020. I surely do have some updating to do!

(BTW I’ve forgotten almost everything about WordPress.)

To keep a long story short, the biggest health events were:

October 31, 2019, Halloween – my fistula access was infiltrated badly – when my INR has high, resulting in bleeding caused a “pseudo-aneurysm” in my forearm. This required surgery. Then, my upper arm developed hematomas, again while my INR was way-high. This resulted in two more surgeries. I was hospitalized for most of November and December.

Due to the swelling, my nerves were damaged. My left arm was useless with constant tingling and numbness in my wrist, hand, and thumb, index, middle, and half of my ring fingers (which continues to this day). This required months of Occupational Therapy – interrupted, of course, by the Covid lock-down.

Right around that time, April/May, I started developing slurred speech; a little at first (at times of talking a lot) but worsening to constant. And my swallowing ability is now affected, too: my food has to be blendered, and straws/bottles are out.

We’ve been to two neurologists and undergone a double-battery of tests which have eliminated everything but the dreaded ALS.

The diagnosis is still recent; we’re trying to get a handle on what it means for our family. My next neurologist appointment is 9/24.

I was happy to see I had a bookmark for SGS posts so I will keep updating you here.

Christianity Is: Tearing Your Heart

Have you ever been really sad? I mean heart-broken, heart-wrenchingly miserable, so completely wretched with sorrow that your voice can not express it and the only thing to be heard is the wordless wailing of your soul?

Have you ever been that sorry over something you’ve done?

Can you feel that way on purpose?

I’m all too familiar with this feeling, both from things I perceive done to me and from my own regretted words and actions. But, as a Christ-follower, it is an emotion I seek daily, as the opening note in my song of crying out to God. I want to be heart-torn, in preparation for His reparation.

broken-heart

Tear your hearts,
not your clothes.
Come back to the Lord your God.
He is kind and merciful.
He does not become angry quickly.
He has great love…
Joel 2:13 ERV

Humility begins with my acceptance about who I have been, who I am, and who I can be in Christ. It recognizes my ongoing, desperate need for God’s forgiveness, understanding, mercy, encouragement, and strength (Running On Fumes, 4/12/16). When I can sincerely reach this agonizing point, I am ready to listen to Him and to fully commit to His path for the day.

mended-heart
But I wipe away your sins because of who I am. And so, I will forget the wrongs you have done.
Isaiah 43:25 CEV

I say I daily search for this, and I do mean that, these days as a believer, it is not so much a sensation found as it is achieved by my morning practices of prayer, meditation, journaling, and Bible-reading. (Would that make them ‘mourning’ practices?) God has promised to forget my sins, but my past is what has made me what I am today, and it will continue to shape me for tomorrow. In other words, knowing who I have been motivates me to strive to be who I could be.

In truth, what I yearn for is the incredible passion of those first encounters with God’s redeeming love; the so-called “mountain-top” experiences. I worry that with anything less I will fall short of realizing my true condition. I fear that pride in myself – in thinking that I have accomplished anything – will creep in and dilute me, will weaken my stance. But this is the leap of faith I must take. It is simple trust in what God says. It is the belief in the unseen. It is faith.

…Maybe He will change His mind about the bad punishment He planned.
(the last line of Joel 2:13 ERV)

666
Want another way to think of it? It is the confidence with which one approaches a daunting operation, like open-heart surgery. I put my life fully in the surgeon’s hands. I had to be assured that God’s will would be done.
(Image: early 2015, about 6-8 weeks after the surgery)

And I want to know that every day.