Sunday, December 12, 2010

It's been a long time...

I hope that everyone enjoyed their Thanksgiving Holiday!! We were able to go up North as planned and actually spent a few nights at the Hyatt in Monterey too. The poker party was a success, they plan on holding a few more next year. (It helps sooo much) We ate clam chowder in a bread bowl on the wharf, and then fed the seagulls the rest of the bread. (Even though we aren't supposed to.) We had a great time with Jason's family on turkey day... I ate waaaaaay to much.
Since then, I have continued with my shots. They don't seem to be as bad this time around. Either I have toughened up since I did the treatments 10 years ago (I have gone through years of puking and 6 surgeries to help) or the fact that they are only once a week instead of 3 times a week really does make a difference! (I'm sure that is the reason) Some of my symptoms have actually gotten better with the treatments, this is because my LFT's are dropping back into a somewhat "normal" range... well, maybe not normal, but better then they were at least. I also haven't been hospitalized at all this month! Can I get an AMEN!!
The shots themselves, I have not been able to give myself this time around, Jason has given me every one of them (Now that's love -- either that or he just enjoys sticking me with needles.) I now cover my eyes with my hands, hum a song, and rub my feet together back and forth while getting my shot. Tonight I actually tried blocking him from going in for the poke. heheee. The next day or two after are the worse of the rest of my week, mostly aches and pains, mixed in with random nausea and vomiting. However, the nausea has changed somewhat - I don't know how to explain it, but when my liver is hurting, there is a different kind of nausea, a more constant feeling. The nausea from the shots seems to be more of waves, giving me plenty of breaks throughout a day. It is much easier to tolerate (in my opinion) Though right now, it is the itchiness from my bilirubin being so high (still at an 8, as of last week) I hate to complain, and honestly, unless you have experienced some form of this torture - you have no idea what I am talking about. It is literally torture. You feel like you are going crazy. You have no control of it and must scratch every itch... and it itches from the top of my scalp to the cuticles of my toes. The other night, we went to my husbands Christmas party (very nice by the way - awesome place) but all I could think about was sticking my arms in the fireplace to stop the itching. Seriously, it can bring me to tears sometimes. On the bright side, yesterday I found something that helps. Painting. Nothing else (even as I type, I am scratching my palms raw) seems to have the same effect. Maybe because it distracts my mind and gives my hands something to do.
Other then that, not much going on. I have been feeling a little discouraged lately. Mostly since my last appointment. I don't know why statistics are so important to me. If there is a 90% chance of not catching some weird disease, I would be 1 of the 10% who do... Still, I consider statistics very important. So when I hear the doctors say I have about a 20% chance of this treatment working it is hard to stay positive. The chances of me eventually needing another new liver are high, but that is not even why I have been feeling discouraged. I met a lady at this appointment. She too has had a liver transplant. We sat and talked for a little while, when she said something that I myself had been to scared or ashamed to say out loud myself. She said she didn't know if she would do it again.I completely understood what she meant. Sometimes I wonder how much more I can take, how much more I want to take. Even though it hurt to hear the words I had thought to myself many times out loud, I am glad I met her. It is a hard battle we fight. Not many will ever understand we go through (Thank God) and just because we feel like this from time to time does not mean we are any weaker or do not appreciate life as much. It's just freakin' hard sometimes. Deep down, I know I will do it again and again if I have to. But knowing that there is no end to my sickness anytime soon makes it so frustrating and hard to carry on with a smile sometimes. Luckily, I have a husband who always sees the brighter side, and has an argument for every negative feeling I have.
I hope you guys have a wonderful holiday season. We've got a few things planned. Next week we are taking River to Knotts Berry Farm. They do an awesome thing where you take in a $20.00 unwrapped toy for Toys for Tots and you get in free. We are also going to take him down to Newport to watch the boat parade. Hopefully I will also have enough energy to bake some Christmas cookies.
Now, it is time for bed... well, it is time for me to lay in bed for a few hours until I scratch myself to sleep.