for what it's worth

I experienced a bit of a setback today. I went in for my 6 week Remicade infusion this morning. No such luck. The nurses-yes, plural- could not find a vein in either arm, wrist or hand willing to take the needle. Very discouraging. After being stuck 4 times and blowing 4 veins the nurses stopped trying. This is nothing new. Each time I come in it takes a minimum of 3 sticks to get the IV started. Very frustrating. My fabulous infusion nurse, Carla, is very sympathetic. She has been a real trooper thru all of this. Now, you may think I'm crazy calling her a trooper when I'm the one getting stuck, but she is amazing. She truly hates sticking you more than once. She usually calls the nuclear medicine department and has one of those nurses-Amy or Nicki- come to stick me. They are used to dealing with difficult sticks, but even they have to do several sticks. I am known in the clinic, not because I am so cute or stylish or even funny ;-) -- I'm known because I am a hard, hard ...

I've been wanting to start some kind of support group for people with bowel disease for a long time now. I am very open about having UC and my battle to find good health care, physicians, diet, etc...and I want very much to help those who are struggling or just need to know others who have similar issues. Bowel diseases are very, very common as it turns out. IBS (Irritable Bowel Syndrome) Ulcerative Colitis, Crohn's Disease or other IBDs (Inflammatory Bowel Disease) can be very frustrating and disrupting to your lifestyle. Most cause very uncomfortable bowel movements, diarrhea, constipation, cramping, nausea, weight loss/gain, vomiting, fatigue, depression and many other side effects. This can be very embarrassing to the person who has these issues. It's not something you want to discuss in front of people you do not know well at all! The tests to diagnose these diseases are not fun either. No one enjoys being poked and prodded but when the tests turn to colonoscopies and ...

This morning finds me refreshed and ready to start the week. I love Spring Break for this reason. We played hard and had an awesome family trip to Winter Park and Denver Colorado this past week. I am now ready to jump back into the work week. Yes, I know, I don't actually hold a job but I do consider playing house work. I came to realize last night that I have had my priorities out of whack. I've been kind of self-absorbed. I just hate it when I do this. It is something that I have to work on all the time. I tend to keep things inside. Shannon often says I am my own best friend. He's right unfortunately. I can entertain my self easily and tend to crawl into my shell like a hermit crab. I really retreat when I'm not feeling good and then I forget to come out once the storm passes. This is very hard on my family. I need to remember to not shut down completely. I do this so I don't lash out when I'm in pain. It's not fair either way tho. I get comfortable in my...

Last night Shannon had the privilege to play Alex O'Brien, a local guy who (before he retired) happened to be the #1 doubles player in the world. Since retiring from the pro circuit in 2001, Alex has moved back to Amarillo and started a foundation to help kids get started in tennis. He wants to be ale to expose kids to tennis by setting up a program similar to that of Kids Inc. This way, kids have the opportunity to learn to play who maybe couldn't afford to otherwise. He's hoping to be able to provide rackets and coaches for the league. Now, back to why Shannon was playing Alex. First, let me say, Shannon is a freakin' awesome tennis player! I'm not just saying that because I happen sleep with him, he really is THAT good (at tennis). Alex is getting ready for a fundraiser thing and so he and Shannon decided on a little wager... Shannon would give the foundation $1000 if Alex beat him and should Alex loose, he would give the foundation $500 and Shannon $500. Alex g...

UC SUCKS! Yep, I said it. There it is- the plain truth of UC. It sucks. OK, now that that's out of my system, I think I can continue writing. Had a bad night last night, hence my irritated and pissy mood. Couldn't sleep-don't know why-just couldn't. So, I started reading a book. Mistake. The book was a topic I felt sure would help me to relax and fall asleep. The writing style of the author was very smooth and she used big words on a subject I was not interested in. This, I foolishly thought, was a book that would put me to sleep. WRONG. I became entranced by the author's literary style, her words and delivery wound around my brain and soon I was lost in the book. Each page sent me deeper into the characters and I became part of the story. I couldn't stop reading. The author's words were so intriguing and her characters so real. I had no choice but to finish the book. I was in pain when I went to bed, now, I realize that. I am used to having some kind of pai...

Sunday at church we were studying Mark 2:13-17, The Calling of Levi. Something jumped off the page at me and I just keep thinking about it. In verse 15, the word sinners is in quotation marks. Either I've never noticed that before (highly possible) or maybe my spirit was quickened by it, I don't really know yet. Anyway, Mark is talking about when Jesus ate dinner with the tax collectors and his disciples and how it offended many of the righteous people. In that time the tax collectors were the lowest of the lowest. People would have rather sat next to a person with leprosy than mingle with tax collectors, let alone share a meal. In Middle Eastern culture, sharing a meal is a very intimate thing so for Jesus to not only talk to the tax collectors but to eat with them... unfathomable and highly damaging to one's reputation. OK, so back to the whole sinners in quotations thing- It was as if, dare I say it, Mark was being a bit sarcastic. Mark starts verse 15 like this "Wh...

I awoke this morning feeling wonderful. I slept great, felt energized and even decided to hit the gym after taking Erik to school. My head was clear and not fogged with pain or the pain hangover that leaves me exhausted. I was ready to start the new day and get a ton done! Then I got out of bed. First thing I remembered, the boys shower's not draining. Oh, and neither is the washer. And, as we brush our teeth, our sinks won't drain either. Shannon called the plumber, he'll come 1st thing in the morning. So, laundry is out today but no big deal. I still decide to make the most of the day. I make it to the gym. Excellent choice, I must say, as it added that runner's high to my already happy attitude. Nothing is gonna get me down today. Halfway through my workout, Shannon calls to say the Heat and A/C guys will be here this afternoon. Our basement is sweltering. Nice. Still not a big deal. I continue with my workout. Feeling good and jamming to my play list. Finished worko...