Wednesday, October 22, 2008
more downers Current mood: depressed
I am in despair. No fuzzy lining, no candy coating, no way for me to make this sound better or easier to take. I have not been talking, writing, or blogging lately because I am tired of talking about my pain, but let’s be candid. The facts are these:- I Have Crohns Disease- I also have Epstein Bar- and now for the final kick in the nuts I have Rhumatory Arthritis Those are just the big things. Forget the anemia, the hypoglycemia, the fibermialga. I have three, maybe four auto immune diseases all completely incurable, all obscure enough for the pharmaceutical companies to deem them unprofitable to study for the chance of a cure. I can’t work, can’t drive, can’t remember conversations I had an hour ago. At 27 years old I feel 80.I keep having fears of my boyfriend leaving, he hasn't left yet, but who could blame him? I'm a sobbing, drugged up mess… and he insists upon staying and loving me and putting up with my outbursts and changing my pain patches when I run out of places I can reach. He even helps take my blood sugar and races to get me something to bring it back up as I'm always low. And then… bless him… he looks at me and quietly says that I will be ok…and for a few minutes I believe him.
Tuesday, September 02, 2008
Semi-Lucidity Current mood: distraught
After 27 days in the hospital and three procedures ( one being a process to place a stint into my pancreas and to sever my bile ducts) later I have emerged. I'm still really fuzzy and hopped up on pain meds, but my central line is out and I am eating some meals on my own with the aid of insulin injections. I want nothing more than to resume normal life, and I'm beginning to realize that Crohns can be a cruel disease that will keep me from feeling normal for quite some time.
I'm sorry that I didn’t want people to come to the hospital this time. The majority of the time I was in so much pain I didn’t feel like seeing anyone.
Moonface (the process by which high dose steroids make your face swell and round out) has also made me self conscious and highly depressed. I'm hoping that as they lower my doses weekly that my face will go down and I will soon see myself again when I look into a mirror.
Tony has been amazing, he still loves me and stands by my side through all of this... if anything this experience has made me see just what kind of man he is, and just how lucky I am to have him in my life.
Words of encouragement are appreciated, I am going through a dark time in my life. Chronic pain is unbelievable to live with and I'm hoping for some cure that will leave me neither loopy or addicted to some narcotic.
Monday, August 18, 2008
Update Current mood: confused
Here is the update, I'm being transferred to the IU Med Center today as soon as they have a bed for me. I am back on a central line again and am being sent there basically to meet with a Crohns specialist. The likelihood of surgery is very high and the decision will be made quickly. Please e-mail my mom, Joanne joeypass@bluemarble.net or my dad, John jpassan@bluemarble.net, if you need to get updates. I am loosing lucidity daily and may loose the ability to communicate clearly for several days. I appreciate all your thoughts and prayers. Thanks, Kristen
Friday, August 08, 2008
LONGEST FEMALE SURVEY EVER
I'm bored, forgive me for the survey...LONGEST FEMALE SURVEY EVER-Don't be shy, fill it all out-Do you sleep in your bra? Sometimes I forget I have it on and wake up on the couch to the horror that is falling asleep in ones under wire. Do you enjoy drama? No... never, nunca, niet, nope, uh-uh, ::shakes head no:: Get my point? Are you a girly girl? Certainly not. Small or big purses? No preference as long as they're cute and functional. Do you dress up on Halloween? I try! I love Halloween! Are you double jointed? yes Where is the weirdest place you have slept? Either the barn at the Indiana state fair or at one of my old jobs, sitting up and driving a horse drawn carriage. Has anyone touched/smacked your butt? yes , does anyone answer no to this? Not if you're in my group of friends =)Last person you hung out with? My Mommy. Do you call anybody by their last name? Um, yes actually... and it took me a long time to find out that it wasn't his first name. How many guys will read this just because it says Lady Survey? Dunno... how many of my guy friends need to waste time? I can actually think of a few =)Do you wear makeup? Sometimes, but Tony is one of those guys that likes me better without it so not often. Ever cried at a movie theater? Yes, most recently P.S. I love You. Can you put on mascara without opening your mouth? I do not think that is humanly possible. Do you think Ryan Sheckler is cute? No Idea who that is...Have you ever been called a bad influence? Actually I don't think so... usually everyone is just a bad influence on me...THIS OR THAT Heels or flats? heels. Skirts or jeans? jeans. Socks or leggings? socks. Hoodies or jackets? hoodies. Straight or curly hair? Naturally curly, but thanks to the invention of the chi iron I can do both. Hoops or Dangling earrings? Dangles. Do you prefer light or dark haired guys? Dark. Are you currently frustrated with a guy? No. Do you have a best friend that’s a guy? Several actually. Have you ever had your heart broken? yes Have you ever thought of having plastic surgery? Not seriously... but I've always wanted to fix my broken nose bump. Do you like your life? Yes, but I would prefer it be lived outside of the hospital. Ever walked into the guy's bathroom? Um.. you may as well ask me if I've ever been to a rave... duh. Have you ever jumped in the pool with your clothes on? Yes... although not so much jumped as I was pushed. Would you ever tell someone you love them if you didn’t? Yes... Have you ever slapped a man in the face? Yes to the bitch slap. Have you ever cried yourself to sleep? yes Have you ever not been able to get someone off of your mind? yeah Do you believe in the saying "once a cheater, always a cheater"?Yes... or at least from a female stand point you will always see them that way and never completely trust them again regardless of how "changed" they are. Have you ever had a good feeling about something? Yes, sometimes I've been right and sometimes not so much. Do you ever wish that you were famous??Yes, for the mullah and the people I could help with it.IN A MAN: Cowboy or Gangster? Me like me some cowboys...Preppy or Punk/Goth? Who are we, Saved By The Bell here? Contacts or Glasses? Contacts... Oasis baby! Funny or Serious? both Romantic or Daredevil? both Cute or Hot? Both Good Dancer or Good Singer? Dancer! Basketball Player or Football Player? football. Go Colts! Smoker or Non-smoker? whatever as long as it's not around me... but I would prefer him to quit. Has a Motorcycle or Has a Sports Car? Muscle car! I like the oldies!
Friday, August 08, 2008
I Hate my digestive tract.
I'm back in the hospital again... Same reason as last time. We're keeping our fingers crossed for a medical fix as opposed to a surgical one. Please keep me in your thoughts and prayers.
Tuesday, June 10, 2008
Remicade II Current mood: encouraged
Had my second infusion of Remicade today and everything went well. Labs came back mostly good... for some reason I'm having trouble with my pancreas but we're keeping me monitored. It was weird today being in the infusion center with cancer children... it was so sad. I go back again on the 8th for my next treatment. I'm still home... going to be at least until the first of July, but I am improving, one day at a time. Thank you all for your continued support! Love you! K
Wednesday, June 04, 2008
Me, Myself, & Morphine
So apparently I don’t "do" oral morphine well... or the antibiotics I was on either. They put me back in the hospital Sunday night and let me back out last night... hopefully for the last time. I looked in a mirror for the first time last night in over two weeks and it was strange... my body has lost so much muscle and fat I barely know it to be my own... I'm so weak that I sleep most all day and lack much of a desire to do anything else. I think I spent most of the last year and a half since my diagnosis in denial, but talk about a reality check... no way of even remotely pretending I don’t have Crohn's... and that it's not serious. I have quit smoking for good (it increases the likelihood of surgery by 80% in Crohn's patients) and I can’t even be around it, so lifestyles changes are in order too... maybe Indy will catch up with everyone else on the no-smoking thing that I used to bitch about =).But anyways, that's what's going on for now... I appreciate all your good thoughts, wishes and prayers. Love you all, Kristen
Friday, May 30, 2008
Home Again Current mood: blessed
I am home today! I begged and pleaded and although I have to monitor my stats at home and take upwards of 14 pills a day it's still much better than rotting away in a hospital bed. I have my next infusion of Remicade scheduled in less than two weeks and so far the first one has made some major improvements... so here's to hoping. I will be off work at least until the 19th of June per doctors orders and then I have to get re-evaluated from there. So I am forcing myself to take it easy... (morphine, OC's, and sleeping pills make that simple)... but your e-mails and phone calls are still wonderful to get. Thanks again guys for everything! Love you, K
Wednesday, May 28, 2008
Infusion One Current mood: hopeful
... is now complete. I am being watched like a hawk to see if anything changes. We should see drastic chance within 24-48 hours.... so here goes my final hope of having a normal body and normal function. My mother and Father, friends and Tony has been so wonderful to me. I send all of you hugs and kisses to those of you who cared enough for find rides out here, or even the time to pick up the phone and keep other people informed of me. It is truly at times like these that I can see clearly who loves me for me and is genuinely concerned for m well being, and those who wait among the dogs and gulls to peck at the carnage. So far, I feel no improvement, but they say it usually takes a couple days. But I'm a glass half full kind of girl anyways. -)Please continue to keep me in your thoughts and prayers, my next infusion will be in two weeks. And for now I'm still being fed though my central line. (PICC)I need to be eating and drinking and swallowing a ton of pills before they will let me go home. I will keep you updated! Love, Kristen
Monday, May 26, 2008
Setbacks. Current mood: depressed
Today was not a good day. Today was my tenth day in the hospital, my tenth day without eating, and today I was informed that I'm going to be here for a while. I was going to start on Remicade today, but my labs came back so bad that it has been determined that the treatment is too much of a risk right now. My white blood cell count has more than tripled and even though I am being constantly infused with several different kinds of antibiotics we can simply not find the source of the infection. I am waiting on the results of today's cat scan to see if we can locate the source on film and then determine whether or not we need to go in and surgically remove it... and a chunk of my intestinal tract, or if we must continue to wait because my body is too weak to go into surgery. I am also now insulin dependent because the nutritional mix they are giving me is keeping my blood sugar high ( which is better than low) but they get so high that I start to feel crazy. Actually just being in here is making me feel crazy. I want to go home. Keep me in your thoughts a prayers... I'm having a tough time. Love you all, K
Saturday, May 24, 2008
everything u never wanted to know. Current mood: anxious
Here is a good link about Crohn's disease if you want to read up...http://www.ccfa.org/info/about/crohnsand here is the new drug I am trying on Monday...Infliximab (Remicade®) is the first FDA-approved biologic therapy for Crohn's disease and fistulizing Crohn's disease, as well as for ulcerative colitis. It is given as a drip via intravenous infusion. The medication is a chimeric monoclonal antibody. In other words, it's a hybrid consisting of 75 percent human, 25 percent mouse protein sequence. It is used for people with moderately-to-severely active disease who have not responded well to other therapies. So if I start having cravings for cheese we will know why...
Thursday, May 22, 2008
Picc Line Current mood: betrayed by my own body
So this is what I am getting today:
A peripherally inserted central catheter- (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time, e.g. for long chemotherapy regimens, extended antibiotic therapy or total parenteral nutrition. First described in 1975 it is an alternative to subclavian lines, internal jugular lines or femoral lines which have higher rates of infection. Subclavian and internal jugular line placements may result in pneumothorax (punctured lung).
A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavo-atrial junction.
PICCs are usually inserted by radiologists, physician assistants, radiologist assistants, or certified registered nurses using ultrasound, chest radiographs and fluoroscopy to aid in their insertion and to confirm placement. Complications may include catheter occlusion, phlebitis, hemorrhage, thrombosis and infection. Urokinase may be used to lyse obstructions. PICC lines generally will remain in place no longer than 30 days, although duration of use varies from just a few days in patients requiring short courses of chemotherapy or biotherapy to a year for patients requiring longer treatment. Commonly, other forms of intravenous access are considered if the treatment course is protracted. While replacement is generally considered a year post-insertion, patients have survived with the same PICC in situ for several years without complication.
Certain types of PICCs have recently been approved by the FDA for use in power injection. These PICCs, often referred to as "POWER PICCs", are designed to withstand the high pressures associated with radio contrast studies.
Thanks Wiki...
I am scared to death... and alone. My mom is on her way up right now to get here before they start, but the thought of anything going into my heart is just terrifying to me.
If anything happens to me, know that I could not ask for better friends, I love you all.
Love,
Kristen
Monday, May 19, 2008
Update Current mood: drained
Crohns Disease sucks. I'm in the hospital being fed though an IV until my intestines decide to let me eat and drink again. Thanks so much to all of you for your support... I am truly blessed.... and thank you Josh for my mental ass kicking... you know what I mean =)Love, Kristen
Saturday, May 10, 2008
Stupid Girl Current mood: ashamed
After all these years spending copious amounts of time being manipulated, used, strung along, and controlled by men, you'd think I would learn... but no. I am a stupid girl. I am that kind of girl... I worry when he does not call during the day, and I fret (knowing... hoping I am doing stupid girl things) about him going out with characters of less than stellar quality and morals (yes, weather you actually had the threesome last weekend is irrelevant, because you're either the kind of guy who does those things or one who lies about them)... and do I mask it with concern that he come home safely.. yes.. at least when I am talking to him... but really I have flashes of his ole' buddy ole' pal bringing along my boy as a co-flirt. I know I should trust him... he has given me no reason not to ( other than the fact that he has a penis) ... and there is no reason for me to make him suffer for the mistakes of others, but I simply cannot let go... I worry... and I am a stupid girl. I also worry that with me being 27 and he being 22 that I am keeping him from the life that most 22 year olds desire. Sure... I like to go out, just not every weekend and you may see me tanked two-three times a year... but I know he would rather be doing it every weekend... and it makes me feel old. I love him... and that is what makes me scared... and stupid. He can hurt me... in huge ways, and I'm not sure I could come back from this one... I already came to him damaged... a fragile package indeed. Drop me and I will be a tough one to put back together.
Thursday, March 27, 2008
something I have learned.
a man that never claims to be something he is not is much better than a man who lies about who he is.
Saturday, February 23, 2008
questions Current mood: sad
How do you approach someone you know and love with something you know they will hate to hear? At what point to you decide to tell someone something so odious to everyone else? How do you tell someone "I love you, but I really don’t like you right now?" At what point to you tell someone that they really suck as a friend? And how the hell do you say these things in a loving manor? How do you tell them that they have hurt you? How do you explain that, yes you are upset that the flavor of the week took priority over your birthday? When is the right time to speak up and say "I don’t know the people you are talking about... nor do I care what they were wearing..."? When is the time to take them by the shoulders and shake them into some sort of conscious thought? How do you tell someone that they are alienating long term friends and only collecting temporary ones? Most importantly... how do you know when it's time to move on and stop trying?
