Thursday, December 22, 2011

Thankful Once Again

Many thanks to my aunts Kathy and Jean, and former co-worker Colleen for sending money to help with my bills. Scott picked up a load at the pharmacy today and we decided to skip a couple that are no longer  covered by my insurance. I am not paying $770 for a months supply of anything unless I am 100% going to die without it. This particular medicine keeps me from reacting to things I eat. I will just have to be super careful. Another medicine was $140 and we skipped it also because there are ways to make do without it.

Kristen has been celebrating Christmas today with gifts from our family. We had a pretty good day with the exception of a bout of tummy trouble after eating some pizza at lunch. I've had lots of company today which helps my mood.

I also want to specially thank Dr. Charles Ford for the beautiful letter he wrote to the company denying my long term disability claim. He wrote exactly how it is - how it feels physically and emotionally, and the time it takes to recover from anaphylaxis. I was speaking about that to my primary care physician on Tuesday - it seems they think you can go in the bathroom, pop an epipen and go right back to work. It takes days to recover physically and I have had so many I am not sure if I will ever recover mentally. Very few people understand the terror of seeing someone with a mop bucket in a public place, or seeing an automatic air freshener dispenser on a bathroom wall. It is terrible to be afraid to go in a public place because you don't know who may have on a perfume that may trigger an anaphylaxis. I really appreciate all Dr. Ford has done for me since I met him in 2004. Also thanks to Barry who takes care of making sure Dr. Ford does what he intends. He is so busy that he has to have reminders I am sure.

Little Bentley is drinking from a cup by himself. He loves water, and especially loves prunes. This child has been giving me the strength to continue to fight this horrid disease since before he was born. He would be fine without me, but I sure want to watch him grow and see what he will become.

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