2010 Disney Adventure: Packed And Ready!

We're almost ready to go! T-minus 2 days!

I am so ready to leave, but I have one more day at work before we go. I've been packing since last week. I like to do things slowly over a longer period of time so I make sure not to forget anything. The last loads of laundry have been washed, dried, and folded. All that's left are the things I can't pack until the morning we leave... like my toothbrush and contact solution.

Some people that go to Disney regularly have crazy packing lists that include things like moleskin for blisters, special water bottles, and even special bags they use for being in the parks. Not me.

I've been to WDW more times than I can remember. Plus living there for 5 months doesn't help either. I'm a simple being when it comes to a Disney trip. But then again I don't have any kids to worry about so that may be why I don't pack my entire life when I go on vacation.

The biggest tip I would give is to not bring in a purse or bag. They weigh you down over the course of the day, and make you hotter when it's already 90+ degrees. I carry everything I need in my camera case... which is about 3x5x3 and I carry it by hand - no strap or attaching it to my pants. Credit card, ID, room key, Disney ID, and camera go in there... THAT'S IT! You don't need all that other crap people carry in. Now my mom likes to have a fanny pack to stuff with snacks for her grandkids, but it's really not needed, although appreciated by the kids. I see people with huge backpacks and I have no idea what they would need that would fill an entire backpack.

I guess I'm just trying to say that I try to pack light for the parks. It really helps on this trip that we have a washer and dryer in our villa, too. I usually overpack my suitcase with clothes that I never end up wearing. Not this time... I'm even sharing a suitcase with Jimmy so I only have half a suitcase to use!! Dad will be proud.

In liver news I'm feeling a little better. For a while I was getting really nauseous putting me out of commission for hours at a time. This usually means I need to eat cleaner (less fat) to help my liver out so it doesn't have to work as hard. I'm still itching and it's still keeping me up at night, but I'm not having to get up for ice packs to ease the itching. At least I'm not like this guy:

I've only been like that a few times, in which I've then been admitted to the hospital for a few days. It's not fun being yellow, and the whites of my eyes always seem to have a slight tint of that nasty color thanks to PSC.

So far in 2010 Disney Adventure:

Intros

Details Part One

Details Part Two

Always Something

Exactly two weeks until I'll be at WDW with my family...

and my liver starts acting up. Great.

I've been diagnosed with a liver disease for almost 3 years now. It doesn't effect my day-to-day life, but it's something that I do need to keep an eye on. It's called Primary Sclerosing Cholangitis (PSC) and basically is the scarring of the bile ducts within the liver for unknown reasons.

I see a hepatologist every 6 months, and Dr. Flamm is my most favorite doctor ever. I went through several doctors in my track to diagnosis, and I'm so happy to have found Dr. Flamm. At my appointments we talk about how I've been feeling, he'll check my abdomen and legs for swelling, and then sends me for a slew of blood tests. The blood tests check my enzyme levels as well as other indicators that my liver is working (or not working) correctly. Also, I have an MRI once a year to check for blockages in the ducts.

There's nothing I can do to treat this disease. All I can do is not drink alcohol, and keep having blood tests and MRIs done. Eventually I may need a transplant if the scarring ever gets too bad. I'm really hoping I'll never need one. According to research the average time period between diagnosis and liver failure is 12 years. I'm part of a support group and there are many people that have had the disease well beyond 12 years.

Anyway... back to what's going on today. Sometimes bile will leak into my blood stream when it can't flow easily through the ducts of my liver. When this happens I get VERY itchy. It's hard to describe, but it kinda feels like little pin pricks under the skin. Itching doesn't help, it's mostly in my hands and feet but when really bad covers my entire body, and most often is the worst at night. I have scars on my feet from making myself bleed trying to itch the itchiness away. It's the worst part of having PSC so far.

I started itching 2 days ago and I'm afraid it won't be gone by the time I leave for vacation. Like the disease itself, there's nothing I can do to stop the itching. Heat seems to make it worse, so I'll ice my feet and hands at night so I can get some sleep, but that usually only helps a little. There is a drug I was prescribed last year when I was itching for over a month, but I can only take it once a day and it needs to build up in my system. I took it again in February and it didn't help with that itching spell... which led to my terrible scar on my left foot that looks like an exclamation point.

If things seem to be getting worse, I'll call my doctor and see if he can get me that drug again, but I really just want to be healthy for this trip!! My last family trip to WDW was ruined when my liver disease showed up and I had to miss the last day at the parks because I could barely stand without wanting to vomit. Another lovely thing that PSC does to me from time to time.

So until we leave I'll be drinking lots and lots of water hoping to flush my system out, getting some sun (some people with PSC claim that UV rays help with the itching), and thinking good thoughts.