May 31, 2006

Writing on the wall or in this case paper

I know my appointment was last Friday and I haven't written anything. I'm sorry for those of you that actually read my blog. So I went in on Friday and I met with Emily first. Goals till the next time I see her *DO MY EXERCISE *READ PAPERS SHE GAVE ME *GET ALL SUPPLEMENTS. She said I am doing good and that I just needed to do that before I went to see her again.

Then I went into the waiting room and waited for Dr. Pebbles we talked and I told her about my headache (which has been non stop for almost 4wks). She said I can start taking the Diamox *AGAIN* if it was helping. She was very excited to have all my records and she said that she will start writing the letter to insurance. My name didn't come up much in the May evaluation because they can't make a decision until they have the Psych. Evaluation results. So Dr. Peebles wanted to let Susan see my eyes since I was a "classic" example of PTC. Dr. Peebles left and Susan walked in. She talked to me first you know the typical "how are you and what have you been up 2". Then she started talking about the surgery and this is what she said.
The board meets for evaluations once a month and I just missed the May one, they didn't talk about me because there was no new updates. When they meet again on June 29th, and if they agree that I can get the surgery than the writing of the letter to the insurance begins. Dr Peebles writes it, Susan edits the letter and has to get Dr. Signatures on it, she said since it is a 5-6 page letter and has almost every detail about me that just those two steps can take about a month. THEN it gets sent to the insurance and they have up to a month to respond once the insurance is approved, Susan looks into the surgeon's schedule (there is 3) and she said " I can tell you right now that August is not a good month for one of the surgeons". So we are looking at August or even September for surgery. BUT that is not all.

I was very confused about this and wrote an email (the same day Friday 5/26) asking Dr. Peebles what she thought she wrote back 2 hours later (WHICH WAS TOTALLY A GOOD SUPRISE) saying : "I have already started writing the letter and will have it past around before the June meeting" AWSOME so maybe things will be faster than August or September, I can be so impatient but we will see what happens.

THAT'S NOT ALL. I saw the Dr. Eisenberg for my Psych Evaluation. We talked for about 45mins and then she talked to my mom for another 15-20mins. She asked about the support I have at home and what I knew about the surgery, etc etc etc. some other personal stuff that I don't want to broadcast on the Internet. At the end of our conversation she said "well I don't see any reason why you can not have surgery you seem to be very organized and understand what will be expected" I said "so thats a yes on your part" she said "lol that is a yes" YAY I'M NOT CRAZY PEOPLE!

Once again I sit here on my bed with a headache in my PJs with sleepy eyes playing the waiting game. We wait and we wait. I still have to get an appointment scheduled with Dr. Peebles I dont think my mom has done it yet. Oh and by the way I'm doing pretty good with my CPAP machine, very hard to get use to but I am doing good.

I do have one question for anyone reading this, how do you use the machine with a stuffy nose? I just felt like I couldn't breath. Do you just not use it that night? I didn't use it that night I just didn't know what do to. Please comment with suggestion, Thank You Everyone.

XXXOOOXXOOO,
Kylie

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