It has been a month since my initial ALS diagnosis. We have no approved authorization in hand. The ALS clinic at UCLA can’t see me until November 9th (that is, if we get the correct authorization by then). The ALS clinic at Cedars Sinai has been very receptive to our calls and is willing to work with us asap. We’ve decided to pay out of pocket and pursue getting the help we need ourselves at Cedars Sinai. 😦
I’m tempted to unleash all my rage and frustration in this post over the futility of our efforts the past 4 weeks…wasted energy, wasted brain cells, wasted tears…but I’ll show some self control and simply say, please pray for breakthrough. Ultimately, we still need the elusive authorization to get me into my network of providers for the long haul (Cedars Sinai is not in our insurance network), I’m still desperate for direction on what I should be doing and, I know it sounds dramatic, but it feels like my hour glass is emptying and time. is. awastin’!
I appreciate the advice people have forwarded my way and know that I’m filing it all to sift through once my diagnosis is confirmed but I haven’t acted on anything yet. Right now, the internet information out there is overwhelming and confusing to me because I have no framework on which to hang the many, seemingly unrelated variables. It’s kind of like being given a huge bag of puzzle pieces without the picture. I could spend hours studying each piece and, in time, start to make some connections between them but I don’t have the mental energy to do that. I’m waiting for an outline of the bigger picture at least (i.e. 2nd opinion and consult) before I can start to make sense of the particulars. There is much to manage, for sure, and I’m taking it all very seriously but the mountain of information out there is starting to feel insurmountable and that’s a dangerous place for me right now. Your love and prayers are our comfort indeed! 🙂
On a completely different note, we got the multi-thousand dollar physician bill for the day Rudy died in the mail today. I’ve been wondering why we hadn’t gotten any bills for that day and assumed the agencies in Guymon, OK were just waiting for the insurance payout before billing us our portion. Instead, the bill in total came today. Which means? You guessed it, another string of calls to the billing office and insurance companies involved tomorrow. Not a huge financial stress as it will get sorted out. in time. after multiple calls. But the emotional pain is deep as I read the itemized bill…”Patient Name: Clinton R. Geyling”, “Date of service: July 25, 2017”, “Description of Services/Procedures: Emergency Evaluation & Management Services, Cardiopulmonary Resuscitation (CPR), Cardioversion, External, Elective” All just letters filling in a form to the people generating the statements but it represents a moment in time that completely transformed my life…the life of my family. I miss our boy tonight…a lot. ‘Kinda looking forward to a day when my eyes don’t sting. ‘Kinda feeling like a hot mess.
Please don’t read any of this as criticism or a bitch session…I really mean it to be a quick glimpse into the life of us right now…for the purpose of prayer to inspire fresh vision for what has become a stale process! I’m desperate for all things FRESH (and maybe an insurance employee who is super motivated, an independent thinker, a keen observer AND who is empowered to seal the deal on this authorization). I thirst tonight for tangible expressions of God’s power in my life…and eyes to see those expressions! I’m definitely feeling like the lame man whose friends went to the extreme effort of hoisting him through a roof to get him to Jesus who was surrounded by a great crowd of people and otherwise unreachable (Mark 2:1-12). I need to be brought to the feet of Jesus by the faith of my friends! Thank you friends for stretching your faith on our family’s behalf!! I have some more thoughts on that subject but I’ll save them for another day. 😉
Thanks for letting me vent, Trish