Learning To Live

I'm officially 100% IV Free for One Year.  To celebrate, my parents and I threw a party on Saturday.  It was wonderful - almost all my favorite people were there, and everyone made it so special.  It was better than any birthday party I've ever had because it had so much more meaning to me.  It was like giving me my life back.  A friend of mine told me tonight, " You really know how to live, girl...".  And THAT made my night because that is what I want to be known for and eventually remembered for - knowing how to live.  Also, knowing how to love. This post is dedicated to everyone who helped me get here - ONE YEAR IV FREE.   To Mom and Dad because they do everything for me.  They always have.  They fight just as hard as I do, if not harder.  I love them with all my heart.  My one wish has always been for them to worry less, and hopefully now they can worry a little less.   To My Brother for being my...

I was going through all my old emails and I found this joke my dad sent me on the first day of a hospital stay: How may doctors does it take to screw in a light bulb? It depends: 1. Why do you need your light bulb changed? 2. Are you sure it's burned out? 3. I've never changed one before, know nothing about them, but now I'm in charge of light bulbs. 4. Light bulbs are expensive, this is unnecessary. 5. This is a "difficult" light bulb, it's uncooperative. And finally a nurse or cleaning person just does it, because it needed to be done, or the patient just changes it herself! Because that is how it works at UW. I have been making a list of things I think all doctors should do before they receive their license. Here are a few of them. * Give a patient a sponge bath or a bed bath. This will give the doctor a little insight into what it is like for a nurse. Nurses work really hard and doctors should be nicer to them. * Be bedridden and be given a sponge bath ...

I am right now calling the ob/gyn clinic because I am beside myself and don't know what to do. This is ridiculous. Yesterday they told me nothing helpful and sent me home to lay on the couch in terrible pain until THURSDAY? I can't do this. I'm so desperate to have someone help me. I'm in so much pain. I hate being alone when something is wrong. I don't know what to do. My biggest fear is being alone, in pain or sick, and no doctor will help me. And they won't help me. I have a fever - I never run a fever. There is something terribly wrong with me and no one will help me. I just want to SCREAM.

I called my OB/GYN at 8 this morning to see if I could get the elusive "emergency spot." I couldn't. "Today is the Doctor's first day back, and she is unbelievably busy." I'm in an unbelievable amount of pain. Who trumps who. She trumps me. I got to see the nurse practitioner. She told me that my cervix could look normal. It just happens to be sensitive and so I bleed a lot. Apparently, she touched it and it started to ooze blood. Yes, ooze blood were her words. So basically she told me I'm fine. I said, "What about this unGodly pain I'm in?" Which made her stop and think. Poke poke poke. Scream scream scream. She says, Well you could have cysts on your ovaries - they can be painful. Or you could have endometriosis. The doctor would need to do surgery to determine that. So my options are surgery or live with the pain? What the fuck? Are there or aren't there endometrial cells on my cervix? I'm guessing bumping ...

So I finally called the gynecologist. It took all my strength and effort to make that call because I really don't want to have to GO to the gynecologist and be examined and all that effort is just hurting my brain right now. So I called the gynecologist and explained that I am bleeding and have CF and I need to get in to see her - and the best they can do is end of June beginning of July- and my exact words were, "You're fucking kidding me." and the receptionist said, "No, I'm not and I'd prefer if you wouldn't use that language with me." Well it was an instinct. What am I supposed to do??? Bleed until the end of JUNE? Bleed my way through Europe??? You're FUCKING kidding me. And the soonest the nurse practitioner can see me is wait for it... April 28th. NOT EVEN NEXT WEEK. YOU'RE FUCKING KIDDING ME. That's 2.5 weeks from now. Thank God we're pretty sure I'm not dying, or else I'd be FUCKING screwed. The nurse is...