Rough morning......
First of all, I was up all night with my little guy. He has this horrible cough and me being the 'former' paramedic, I was listening to his lung sounds, giving him some meds to try and give him a little comfort. I think we both looked pretty bad this morning. Today he was a 'little' better but now Camryn has it!! So, no sleep again tonight!
I went into work for a little bit and when I got there, I think all this stress just hit me like a ton of bricks. I am SURE the lack of sleep didn't help but my mind started going a hundred miles an hour with questions like: How am I going to get to Stanford? How am I going to pay for this? How am I going to win my appeal? Blah, blah, blah!!........ Then I started thinking about holding Austin last night and what if this is cancer, what if, what if, what if...
I won't go into the ugly thoughts I was having. Sometimes, just sometimes, I let this ugly thing get best of me. Anyway, I got over it quick when my co-worker came over and told me to knock it off - that I will be just fine!! Thanks Gloria - I needed a little kick in the pants! I feel strong 'most' days.....but sometimes it just all seems to be too much. I think because there are SO MANY 'unknowns' with my diagnosis, I just wish I had all the answers up front (even if it's not what I would want to hear).
Left work early and took Austin to the doctor - don't know why. I always know what they are going to say (I swear I should've gone to medical school)..... :)
Came home and my mom hung around so that I could make a TON of phone calls. So, I accomplished a lot and felt good! I called Sharp to get a cost estimate of the treatment (to compare w/Stanford - who knows, it could be a cost savings to Sharp?). Then I called Stanford to ask for HELP!!! I asked if I could basically be a 'guinea pig', case study, whatever.....I figured that since this is a rare tumor, maybe they would want to write about mine (since mine has some interesting elements to it). I am waiting to hear back. I also called the doctor up there and left him a message to call me. Some of you are probably thinking, 'what'?? But why not?! I do really need to get his opinion to see what I could do. Worst case, he doesn't call me and his nurse does. And if he doesn't, I have a letter ready to fax to 'him' to read... :) :) :) I also contacted The Brain Tumor Society and they gave me SO MUCH information! What other organizations can help with my travel expenses, gas cards, etc.... (thanks Gloria for the tip)
Then I called the MEA (our union). They have a 'liason' who works with the employees and insurance companies to appeal denials. I am really hoping they can help out.
So, I felt like I made some progress today and now the waiting game starts. (Take note: When you call someone for something, write the day, time and who you spoke with...because if I don't hear from them in a few days, I will be calling that person back. Follow ups are crucial for stuff like this!!) Most of you know how organized I like to be (it's gotten bad though after kids) but I have ALL my information in a three ring binder and organized - this will save you SO MUCH time if you ever have to go through something like this.
In the meantime, I am selling a bunch of stuff on Craig's List and EBAY to start saving! I have a really nice entertainment center sitting in our garage that I should have sold months ago. So, I am motivated to clean house! :)
I need to get up there asap. The doctor's wanted to treat me as early as this week or next week and that is all I can think about. I gotta keep moving forward and pushing this thing along.
Today's Daily Affirmation:
"My life gets more fabulous everday!" (Louis Hay)
OK - when I read this I thought...I am not sure about fabulous but definitely interesting!!
Thanks for sharing my journey with me.
I love you all!!! :)
Rachelle
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