The past couple of weeks have been a bit perplexing for me physically…I’ve noticed a obvious loss of function and greater weakness in general. In addition, on Christmas day I began having these choking episodes that seem to be triggered by muscle spasms that have left me feeling frightened and discouraged. I started the new year off with a visit to the neurologist yesterday and even though I kind of dread these appts, I was eager to talk to the doctor about the new developments I’ve been experiencing. Every appt I go to, I rate my function on this universal point system to track the progression of the disease and I typically lose 1-2 points at every 3 month appt…the neurologist questioned the fact that I lost 8 points in yesterday’s assessment. As a result, she wants me to follow up with another swallow study and lung function test but those have to be put on hold for a couple of weeks as I also tested positive for influenza yesterday.
I’m actually kind of relieved I have the flu as this might explain the quick progression of weakness I’ve experienced. Maybe my poor score on the ALS assessment is due to it being an “off” day. I’m praying so and also praying I can nip this flu bug in the bud quickly before it creates greater respiratory issues. I sure am uncomfortable and can’t cough strong enough as is needed. Would you please pray for health in our household as the boys head back to their campuses this weekend and Olivia returns to school on Monday? I’m on Tamiflu now but will be contagious for a week or so.
(I’ve shared similar reflections in the past but it bears repeating as it’s where my heart is today)…Visits to the neurologist (all of the doctors I see, really) are definitely exercises in emotional steadfastness…I go with these stupid, high expectations of being helped, somehow relieved of my symptoms for even just a moment and walk away reminded that all the medical community can really do for me at this point is to monitor my journey and suggest OTC drugs and supplements that may or may not help “depending on the individual”. I don’t blame the medical community (I’m very grateful for the care I am getting)…it’s just the nature of the disease and the unmet expectations (no matter how unrealistic) hurt. I had similar emotional responses to Rudy’s check-ins with his cardiologist and the heart clinic down at UCLA. If only something specific could have been done pro-actively as opposed to just responding to what his body was doing…if only.
It’s important for me to keep days like yesterday in perspective…emotionally charged, physically exhausting, drowning in “to dos”…it’ll feel lighter and brighter when my body doesn’t ache. Rolf and I had to do some power-of-attorney stuff yesterday as well…we called Schwab to make sure Rolf can manage/access my retirement account. I had to talk to the Schwab rep to verify my consent and said “Hi Alex, give me just a minute. I have ALS and can’t talk well. Can you understand me?”. There was a moment of silence and Alex responded “Yes, I can understand you.” and then went on to say ” Thank you for your courage, Mrs. Geyling. I’m honored to help you today”. He proceeded to ask me the necessary security questions and we finished our business. I hung up with tears in my eyes…I engaged in the “task” at hand so matter-of-factly and it was met with this sweet expression of humanity that, frankly, I didn’t expect. I wish I felt courageous, my friends, (today especially) but I’m grateful for the encouragement nonetheless. 😉 God is present in big and small ways.
And so the new year begins…thank you for continued prayers!
Love and more love.