Wednesday, March 17, 2010

Late night Mac N Cheese

I just made myself some home made mac n cheese, and for the record...It always tastes better when mom makes it.

Started my doctor diary today. My doctor wants me to keep track of my health on a daily basis. What i need during the day example extra xopenex ibuprofen etc.

See the problem is my doctors are very clinical, they feel they need to treat the disease based on statistics, and well I'm not one of those people that's average in CF. My team is new to CF and are following the guidelines very strictly and even though i have lived with CF for 13 years (i was diagnosed when i was 10) I clearly have no idea what I'm talking about. So i need to prove that I'm sicker then what i look. Sounds like a hard task. I mean just because i come to my appointment with make up and hair done doesn't mean everything is fine. Like i told my mom i feel like they think I'm a hypochondriac. The joys of me

with love


Jenny Livingston said...

I, too, have recenly had issues with people close to me thinking I'm making stuff up about my health. It's difficult to communicate how sick you FEEL when you still LOOK fine. Luckily, I have very supportive, proactive doctors. I can't imagine how hard it would be to have your helthcare team questioning you...

I just linked to your blog today, but will continue to follow it. I love connecting with other CFers, especially the ones close to my own age. :)

Jesse said...

Feel free to ask Ronnie at or me at anything you want. We've been under top-notch CF care our whole lives (30 and 31, respectively).

You may have to travel to get good care. What city/state are you in and what hospital do you go to?

Jessx0x0 said...

Thanks for the words everyone, I live In CA and go to Kaiser sunset :)


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