Goddess blog

My continual resolution to update more often doesn't seem to stick very much, does it? Until I get my thoughts in order... or something, Here is the blog that I read at the Goddess Monologues 2 Saturdays ago. It's essentially a recap of the whole illness, but with the most important parts... the people that have done SO many cool things for me during this time. Damn, I am so lucky.
Dedicated to the Goddesses and special friends…
I got a call at around 4 pm one Thursday…. It was Gypsy (the ex girlfriend) asking for a ride home for one reason or another. I wasn’t feeling all that great, but figured since she was hungover and I wasn’t that I could at least drag myself out and get her. I did so, and by the time we arrived in our neighborhood, I was feeling quite a bit worse and warned Gypsy that I might need to call her to go the hospital… maybe it was pancreatitis or something. I said this half jokingly, as if saying it would prevent it from happening. You see, I’ve had acute pancreatitis twice before since 2001. What the hell is pancreatitis, you wonder? Well, it’s caused primarily by high triglycerides, alcoholism, and gall stones. I had outrageously high triglycerides, and of course never could bring myself to heed the warnings from the doctors never to drink again. I really, really liked my Chardonnay.
Within half an hour, I called Gypsy back and said “I gotta go to the ER.” By the time she arrived at my house, I was on the floor writhing in pain. I figured it would be another acute case that they’d manage to get under control in one or two weeks, like in the past. Oh boy, was I wrong. Turns out my pancreas was really, really pissed. It was producing large amounts of digestive enzymes which were not only eating the pancreas itself, but wreaking havoc throughout my entire abdomen. Since that day (May 12), I have been hospitalized at KU MED and LMH probably 20 times in the past 9 months, with every weird complication imaginable, including surgery, multiple drain bags attached to my body, feeding tubes, and dropping down from 210 pounds to 98 pounds. Yikes!
Throughout the surgery, hospitalizations, non-stop vomiting, and generally being really, really ill, I have been lucky enough to have a bevy of fabulous friends to literally carry me through all of this. Many of these friends are goddesses, some who should be goddesses, and a few are even boys. People have brought me food, visited me here and in Kansas City when I was at KU Med, taken out my trash, cleaned my house, taken care of my dogs, paid my bills, called regularly to check on me, sent me funny cards, driven me to long boring KU Med appointments, cleaned out my puke buckets, and watched me go up and down on this roller coaster while being as supportive and upbeat as humanly possible. There have been many tears, times when I’ve wanted to give up, and times when I have felt completely hopeless. I am grateful every single day that I’ve had so many good friends to pick me up and dust me off every so often and remind me to be strong.
They say that a catastrophic event like this will really show you who your friends are. It’s true. I have been amazed at the number of women who have been so totally there for me despite their own busy lives, women who I’ve only been friends with in the past couple of years. And a couple of friends that I’ve known for many many years who quite literally disappeared when I got so sick. One old friend showed her true colors when she recently emailed me that “while I was laying around being sick, other people were going on with their busy lives and just didn’t have time for me.” After I hit delete and decided to ignore that email, I thought how damn lucky I am that not everyone felt that way… despite kids, boyfriends, grad school, jobs, etc, I still get notes, calls, and drop-in visits that let me know that I’m not forgotten, and people do still care.
I have spent a lot of time lying around sick. It’s not fun, I’ve lost my job, and actually had to apply for public assistance. As someone in a social work type job who has helped countless people apply for such assistance, it was surreal to have to do it for myself. It’s surreal to be 36 years old and to be this sick, some days it seems there’s no end in sight. Other days that one phone call or note or visit makes all the difference, and actually keeps me going through another dip in the roller coaster that is now my life. I do have a very different view now of who my true friends are.
Thank god for the girlfriend who spent hours and hours sorting through all the clothes that are now to big for me, in my bedroom and utility room, cleaning my unspeakably filthy house, and getting me organized.
Thank god for the women who gave me their “skinny clothes” to wear.
Thank god for my ex boyfriend, who dumped me in January of last year, but has stuck around taking out trash, watching movies, cleaning puke buckets, and taking care of the dogs, despite our now platonic relationship.
Thank god for my oldest friend, Scott, who calls 6 times a day just to ask if I am eating, drives me wherever I need to go, and helps pay my mortgage.
Thank god for my parents, who pick up where anything else leaves off.
Thank god for the goddess who has washed my hair countless times, kept it styled, and listened to me whine about my hair falling out and everything else going on.
For moral support, shoulders to cry on, bringing me drinks from Sonic, helping me with my house, encouraging me to eat, passing the word when I am in the hospital, visiting me, and generally taking care of me, Thank god for goddesses.

Bilirubin and such

Apparently they don't like my bilirubin numbers. Bilirubin should be below 1, and mine is 5.0 Anyway this goes along with the fact that the liver drain needs to be replaced, my doc doesn't want me to wait, so I have to go to KU Med emergency department, wait there for several hours, get admitted to KU, probably sit around for a few days while they decide to replace the tube, and then come home again. Anyhoo... I am sad because I have work to do and social engagements that now must be cancelled. BUMMER!!
I guess I am going to do my timecard and go home and pack a bag for my trip. I'm going to pretend that I am going to the Spa. Maybe that will help. I am also sneaking in my own Xanax.
I'll post more later...

Call Me Mellow Yellow...

Today I applied my lovely purple eyeshadow that I've been wearing lately, and it seemed a bit off. I couldn't figure out why it did not look right. Then when I got to the Doctor, complaining about the fact that I have been sleeping like 16 hours a day, he said "well, you're yellow." Sure enough, I stepped over to the mirror, and my eyeballs were yellow. Which means that my liver drain was not draining correctly. On a good note, it started draining right away when I got home and hooked it up to an external drain bag, so I'll just have to deal with the external bag for a few days until I can get into KU Med and have them re-do the drain. I am still hopeful, since this is the longest that it's ever worked this well. I am counting this as a bump in the road, and not a major setback. I really have been feeling generally well, aside from the tiredness. I do feel like I am on the mend. Saturday night was the fabulous Goddess Monologues, and as soon as I bring my jump drive home, I will post the blog that I read dedicated to the Goddesses and everyone else who has been so wonderful during all of this. I am thrilled today to learn that the person who will be taking my job over will be Scott. He really really needed to get out of CLO, and work someplace that will appreciate him and all of his experience. It makes me feel better that someone like him will be handling all of my caseload, as I miss them and feel like Scott will do really well with all the families. I'll post more often now that I am hooked up at home, so check back regularly!!