I have had a week....fighting with the bureaucracy sea of insurance, medicaid, medicare and DME (durable medical equipment) providers...Today I literally thought I was going to come unglued! The "tipping point" so to speak, was when I got a letter from Medicaid saying that I have an $837 a MONTH spend-down (that is the out of pocket expenses I have to pay before Medicaid will start paying!). I hope and pray that it is a typo....... or that it is $837 a YEAR... good grief! I'll keep you posted on that one...frankly, I no longer wonder why people buy guns and go on killing sprees. What I can't for the life of me understand, is why only private industry, school children and the post office are targeted! (JUST A JOKE FOLKS!!!!!!!!!!!!!)
But then tonight I met some "real people". I went to my first ALS support group meeting. Now, I'm not a real "support group" kinda person, but I did have a cool experience tonight. There was a lady there with bulbar onset ALS who literally could not talk at ALL, and her name is Claudia. After the meeting we started "talking" (she wrote notes on a piece of paper) and it turns out that she got the "loaner" communication device (Dynavox DV-4) that I had for a trial period. And some of the info I had entered (phrases like "I love you Christopher" and some other semi-personal stuff) was still on it. She told me tonight that she had PRAYED for me, as soon as she got the device and felt that she knew my family a little from that information (none of it was private or personally identifying...it is just "coincidence" (ha!) that we met). Someone PRAYED for me who had never even met me or heard of me by name! Because they knew someone out there had ALS and had a young son named Christopher!
Please join ME in praying for Claudia. She is a grandmother and is very rapidly progressing (but you should have seen her eyes light up when she talked about when she dies...she gets to go to HEAVEN!). God is good...even when life is frustrating. Love, Claudia
