Shaky- Shaky

Children are resilient. They have a hurdle- they jump right over, without over thinking or analyzing. Usually they jump up and keep running, but there is always one person that doesn't- that person is looking back and asking her self "What did I do differently?" That's how I feel right now. After have several months of semi- healthy months, Sunday morning was like a big slap in the face. Severe right pain in lower back... could mean- ostomy site- obstruction? Gallbladder- still haven't taken that out (I would pay good money for whomever needs gallbladder removal practice), kidney, or liver- evidently I have a fatty one that can cause pain- who. knew. Saw a new GI doctor and he was extremely helpful. The disease will slowly get worse, probably to the point of not eating by mouth... yadayadayada. Final diagnosis was an UTI. Waiting on the results from the scan to count how many stones I have in there- according to the doc "several"- when I walk around I am like a 1 person band- stones in my right kidney, stones in my left, stones in my gallbladder. Sounds like a good song- maybe we won't need a deejay for the Reception this weekend- maybe I'll just jump around on stage.

Here's to jumping, falling, and getting right back up.





- Posted using my wicked cool iPad!

Location:Wonderland

The Year of... Transformation?

April 23rd, 2010

It's been 1 year since my life changed.

April 23rd, 2010: Total Colectomy, resulting in a Permanent Ileostomy

June, 2010: Lifted a case of water, resulting in a hernia.

Heart Attack (that was so. much. fun.)

August, 2010: Staph Infection around the Stoma (thanks Morgan! aka. Carrier Monkey)

September, 2010: Simple Hernia Repair. Ended up in the hospital from complications (obstruction and abcess) for 22 days.

October, 2010: Hospital.

December, 2010: Kidney Stones! Wound up in ER with what I thought was pain from the abcess- guess what! Kidney Stones.

January, 2011: Got those dang stones removed. They thought I only had 3- but I actually had 10+. I'm an overachiever.

February 2011: Break! Went to Mexico!

March, 2011: Hospital for a week. Infection? Obstruction?

April, 2011: Hospital for a week. Fungal Infection in Small Intestine, with possible obstruction.

A few things I have learned:

1.) make good use of the days I feel great and have energy.

2.) I can't do everything. One activity a weekend is pretty much my max- I have to be realistic and understand that people will be disappointed (just not as much as I am).

3.) even the little things (like onions on hotdogs, or, accidentally swallowing my gum) can cause the biggest problems.

4.) I have the best of intentions.

5.) it will be alright in the end. if it's not alright, it's not the end.

Love, in the Everyday

I love Morgan because...

... she is still innocent enough to believe that a "hoe" is a gardening tool.

... she called me (yes, she is allowed to take her phone to school on days she rides her bike by herself- AND, she turns it off as soon as she calls) today to let me know she was on her way home from school. "Don'tworry, Mama- I'm only 2 1/2 minutes away."

...she is starting to learn to love soaps. Using them, included.

...she is sleeping in her own bed (HUGE, by the way) and waking up in a great mood to her way cool alarm clock.

...I give her enough money to get a SnoCone after school on Wednesdays. After she puts the money in her backpack and takes HER money to get a friend a SnoCone that normally would not get one. (it makes my heart happy.)

...she is going to be 10 in a month. TEN. (Do you know what that means? I have aged also. Damnit.)

...she understands that when I'm sick, I'm really sick.

spoon

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else being in control.

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has a chronic illness.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding chronic illness, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

even Elizabeth Taylor had a Twitter account.

"Every breath you take today should be with someone else in mind."

~Elizabeth Taylor

stuck in the middle.

It's March 28th. I have begun the journey into my 12th month of having my illeaostomy. I read an article the other day that had a statistic regarding chronic illness- "Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)" Do I have cancer? Nope. Do I use a walker or wheelchair? No. When you are chronically ill the best thing you are given (other than the freedom to eat whatever you want without guilt) is a "free pass." An excuse that gets you out of daily activities that you would normally do (unhappily). When I'm "not well" Morgan gets to/ from school, homework gets done, bills get paid, work understands... all while I'm in bed (home or hospital). The ones closest to me fall in a "Casey is sick routine;" shit gets done. I am 31 years old and stuck. I leave work everyday with the attitude "what if I don't come back tomorrow and I'm in the hospital for a while- "must. get. work. finished." I don't plan my weekends too far in advance because what if I don't feel good? I don't want to disappoint anyone by canceling out. I try to plan my evenings with "when do I need to change my bag?" I even try to eat dinner earlier than before because... well, use your imagination. The miracle of 2011 (so far) is the fact that Tyre and I planned and WENT! to Mexico for Abby's wedding. Nothing stood in the way- not the 10+ kidney stones I had removed 2 weeks before, or, the stomach bug that was being passed around between Morgan and me. I am trying to change my attitude, my behaviors, and my generally outlook on everything. I am trying to say, "yes, I can totally do that" as opposed to "ummm... no, I'd rather sleep."

Is it hard? Yep. Just ask the cream in the middle of the Oreo. It's tough to know you're the first to go, but just think! it's the most enjoyable part.

unfair.

"Why does life carry some people on the crest of the wave while the others drown beneath the water?"

In a Rut

This is the conversation Morgan and I had on the way to school yesterday...

Morgan: We do the same thing every morning. You say the same things, do the same things, and always put your seatbelt on once we are out of the driveway. Mommy, we're in a rut.

Me: How should we change things up a bit?

Morgan: Stop going to school. If I didn't have to go to school we wouldn't be in a rut.

Does Oprah really need her own network?

It's no secret that I love Discovery Health Channel. It's my blankie. My lovey. My home away from home. The DHC is my failsafe- if the Real Housewives... aren't on I can pretty much guarantee that there will be a special about the kid who cries bloody tears or the tree guy (my personal favorite). And what about the women that didn't know they were pregnant? I don't want shows that make me feel warm and fuzzy. I need shows that will help me self diagnose the boil on my butt. So, Oprah, you can take back Suze Orman, Dr. Phil, and Dr. Oz and give me back Dr. G.