Thursday, December 9, 2010

In and Out

I had my Gastroscopy yesterday. It's the procedure I had mentioned in an earlier post. It's where a tube is inserted into the esophagus and looks for discrepencies in your stomach! It's awful, but as with most things...I had no choice! It went well. Dr. says I don't need to have the Banding procedure on my veins! This is very good! He took a biopsy of "something" down there as well but won't know results until later. Not too worried about that though. I do however, have Gastritis. It's just a fancy name for inflammation of the stomach lining. Now I can add a new medication to my repertoire...yay! I'm going to have to buy a XLJUMBO size pill container..hahaha...
I really don't know how many more meds I can handle...it's like having another meal at meal times. Super filling!

So, I have to stay away from spicy/acidic foods and drinks to help ease pain, which is sad because I was just starting to like a little spice...not to mention coffee!!

Until next time...xxoo

Friday, November 26, 2010

Winter Wonderland

I love our weather. No...I don't want to be a weather girl,ha,ha,!! There's just something very comforting about throwing on layers of clothes and snuggling under a pile of warm blankets. Trust me when I say this doesn't sound like the normal me. But that's just it...I'm not normal!! My hot flashes have subsided tremendously in the last month. I now feel very cold, bone chilling cold, throughout my entire body. It's sort of par for the course, really. I can go through extreme highs and lows in body temperature. It's sort of like being in the early stages of Menopause, and yes, with that comes extreme highs and lows in my moods as well! I'm actually quite comfortable now with labeling myself moody, lol....

Body and mind start competing against each other. Circulation is not so good at the moment. I have some Petechiae on my thighs and it's painful and get's itchy if I stand for long periods at a time. Petechiae occurs in my body for a number of reasons..one, being deficient in Vitamin K, and also poor blood clotting factors. It shows itself as tiny clusters of bruises and can take anywhere from a month to 4 months to dissipate.

So, this kind of sucks right now but things could always be worse! I think I should go eat a donut now! Ha...
OOoooo...better yet, thanks to my dearest mommy I have a fruit cake sitting in my pantry just dying to be eaten!! Lol! Word of the wise...never in passing conversation tell my mom you have a weakness for Christmas fruit cake with marzipan icing! Next thing ya know she'll arrive at your door with the entire loaf! Sans the marzipan icing mind you...bah!

Saturday, October 16, 2010

Escape from Reality

Darren and I went to the Gun Range the other day to blow off some steam. I thought it would help to release all these pent up emotions flowing through my body. Feelings of anger, sadness and well...just being scared,really. Firing bullets as fast as I could and as much as I wanted at a green guy on a piece of paper was not what I expected! I wanted to stop and leave, how is this fun? I felt even more scared and a rush took over me- I felt all flushed and couldn't see because my eyes were drowning in my tears. It was a different kind of scared though....a kind that made me want to stand up to it and show it who's boss.

So, I did. I didn't leave. I stopped crying and faced my fear head on! We ended up closing the Range down and I walked away feeling proud. LOL..now this doesn't mean I 'm going to do it again anytime soon but if I can face this challenge head on then I can face all of this PSC hoopla....

Next time I want to blow off steam though I think I'll try sipping Pina Coladas on Maui's white sandy beaches!!

Monday, September 27, 2010

Sept. 27/10 3 mth follow up with Dr. Weiss (GI Specialist)

Same old, same old today.

Dr. Weiss ( my biggest fan and specialist since day 1), says my eye whites are looking good-meaning not very yellow, considering my bilirubin levels are in the 90's. (Bilirubin is the brownish yellow substance found in bile. It's produced when the liver breaks down old red blood cells and then is excreted through stool.)
However, in my case, my liver is quite damaged and does not perform these normal duties as it should so it tends to circulate and remain in my body. When bilirubin levels are high, like in my case, my skin and whites of the eyes will appear yellow. If they persist to go higher, I will develop jaundice.
He says I'm looking well, considering!

He's ordered a Gastroscopy for Jan. 2011 sometime. This procedure is like many I've had before. A camera will be inserted through a long tube down my esophagus to my stomach to see if any of the varices( tiny veins) have become inflated. If they are, I will need a procedure called Banding. This is where they band off any veins that could rupture and cause internal bleeding.
I had this exact procedure when I was 3mths pregnant with Gage- as the pressure from an ever growing fetus in a woman with my condition could potentially cause tiny veins to rupture. Luckily gor Gage and I, this did not happen!

This past week has been a very draining one. I have felt nauseous, light headed, and physically exhausted. It doesn't help that there is a rambunctious, whiny, stubborn yet sweet 3 yr. old at my ankles 24/7...lol...
But how can I blame him, it's not his fault mommy is tired and needs her butt physically glued to the couch!
I pray for the days when I don't feel like this......

Sunday, September 26, 2010

Hey everyone,



As you all know, I have an auto immune disease that affects my liver called Primary Sclerosing Cholangitis. Below, reads a bit of what it all entails and will hopefully answer any questions in your mind that some or all of you may have asked yourselves at some point! It has been a challenging task to try and keep everyone on the knowing end of it all and I apologize if any of you have ever felt left out ...it was most definately not my intention. So here is my attempt at keeping everyone in the loop. Thanks for being patient as I should have started this blog many moons ago:)

PSC which stands for Primary Sclerosing Cholangitis, is a chronic, progressive disease that damages and blocks bile ducts inside and outside the liver. Bile is a liquid made in the liver. Bile ducts are tubes that carry bile out of the liver to the gallbladder and small intestine. In the intestine, bile helps break down fat in food.

There is inflammation of the bile ducts that leads to scarring and narrowing of the ducts over time. As scarring increases, the ducts become blocked. As a result, bile builds up in the liver and damages liver cells. Eventually, scar tissue will spread throughout the liver, causing cirrhosis and liver failure. In a nut shell...this is what is happening to my liver and then some....

PSC is linked to inflammatory bowel disease (IBD). About three out of four people with PSC have a type of IBD called ulcerative colitis. I am one of these lucky people! I also have 2 small gallstones and therefore endure gallbladder attacks on occasion. Not fun stuff let me tell ya! But all par for the course.

The cause of PSC is unknown and so far there is no cure. There are meds I can take to relieve symptoms and manage complications such as pruritis(itchy skin), and antibiotics to help treat various infections, and vitamin supplements. My body simply depletes all traces of Vitamins A, D, E, and K. Also, I get my fair share of regular MRI's, ERCP's, and CT Scans when needed. With having Ulcerative Colitis, the risks of getting colon cancer are doubled and so I get to look forward to enduring annual Colonoscopy's!!! My favourite..ha...not!!! Sorry, that last sentence may have been more than you wanted to know..lol..

They say my liver's time is almost up now as it has been a long 9 year rollercoaster ride. Nobody can predict when that day will come exactly, and that's what's so hard about this whole thing, really. Statistics say the average life of a liver for someone who has this disease is 10 years. I feel though, that I could get 15? Huh, I don't know....more wishful thinking I guess! On days I feel well it's 15, on days I don't feel well, it's more like 10. I know it's coming and it's out of my control.......

The only definitive treatment is a liver transplantation. And thus begins my journey......