THIS is what I've been doing.

I've dreamt of "retirement" for three years; I've had Pinterest boards, magazines book- eared for projects, lists of books and movies to entertain my days of lounging in the sun by the pool.  But, wait.  I don't have a pool.  And I can't be in the sun.  So WHAT do I do with my time?

I Like Texas, Ain't if Fine Here

"Well there's old dancehalls and little cafe's, where you can get a taste of the Lone Star State, strap on your boots and have yourself a laugh or two, well there's no line dancin' just straight romancin'." -Pat Green, "I Like Texas"

When given the choice to go on a trip/getaway (whether somewhere a few hours away or across the country) I typically pick to stay home; it is my 'comfort zone,' my nest, my safe place.  I don't know if this is an 'OCD' thing, a crazy maternal thing, a chronic illness thing, or just part of my genetic makeup/ personality quirk(s).  Since 2010 it has been a chronic illness- I can't stay comfortable in the car for very long periods, I like using my own  bathroom, I can't predict how often I will have to change my bag (so that means packing up extra supplies, and always the question that lingers is "what if I have to go to the hospital or clinic?"   One of the goals I have set for myself (since I decided to "retire") is to get out more; not like normal places (Target, Movies, etc...), but to travel to places where I stay overnight.  This past weekend I got to do just that, Tyre's cousin got married near Abilene (beautiful couple, ceremony, and reception) and I packed up Saturday morning and we left town.  We stayed at his grandparent's house and it was the perfect amount of time, in my opinion, to be away from the house.  It is a 3 hour drive, a beautiful drive- and I enjoyed it because it's Texas and it's home.  We stopped at Dairy Queen, the obligatory stop on any Texas road trip, and despite the migraine lurking in my body- the three of us had fun.  Pat Green came on the radio and I was reminded how much I really do love Texas; the bluebonnets, Dairy Queens, the Lone Star Beer, dancing, barbecue, and wide open spaces (cue Dixie Chicks song). 

 

There is something that happens when you are driving on a trip.....

Your mind wanders, you day dream, you take mental inventory... and you escape.  

I plan on doing a bit more escaping in the near future.  

"Yeah, well, I like Texas, ain't it fine here...On the Sunday side of a road trip weekend, Lordy I was feeling so low." -Pat Green, "I Like Texas   

                        (the two of us, after the ceremony)

Life Lessons with Legos

Peace is a daily, a weekly, a monthly process, gradually changing opinions, slowly eroding old barriers, quietly building new structures. -JFK

Morgan recently became interested in Legos.  She has been passing up playing on her iPad or watching TV and going straight for the Lego sets we have been picking up at Target.  The bigger the better.  Legos prove to be quite an internal battle for me; I don't like clutter, I don't like 'toys' left out, but, she has been working so hard on getting them put together I can't bear to just pack them up- so currently they are displayed on the counter in the kitchen.  

Since my "early retirement" on March 28th I have been working on 'building' my new life.  I worked in the same profession for the same national program for 7 years, I was good with my clients and enjoyed spending time with my co-workers/ friends.  It's been two weeks since I left my job and I have a routine.  A routine of television shows, cleaning, and napping- but a routine none the less.  Everyone asked me what I was going to do now that I am not working and I realized that I really just want to do nothing.  3 years ago on April 23rd I had a total colectomy and since then (I hate to say it) but it has gone down hill.  Every procedure, every surgery, every illness came with symptoms, pain, and guilt.  Guilt that I wasn't at work, guilt that I wasn't a participating member of my family, guilt that I had to cancel plans all the time.  Since April 2010 I haven't focused on ME.  I was always trying to push through, "I just need to get back to work,"  "I just need to get to the weekend to rest,"  "I just need to get through this day so I can go to bed."  And to be honest, it sucked.

For the past few days I have been making lists, setting "now that I'm not working" goals, scheduling FUN appointments.  I'm not going to lie, it's hard.  A few things i have learned is to not make commitments and always expect NOT to feel good, so retraining my brain is taking some work.  

As I pass Morgan's Lego town in the kitchen I am reminded how hard it is to build (time, energy, etc..) but also how easy it is to tear down.  So, for the next few weeks I'm focusing on building my new life- if only I had an instruction booklet.       

I have an Invisible Illness

30 Things about My Invisible Illness You May Not Know

1.) The illness I live with: totally unknown. a big mystery.

2.) I was diagnosed with it in the year: undiagnosed.

3.) But I had symptoms since: 2001.

4.) The biggest adjustment I've had to make is: taking naps and canceling plans.

5.) Most people assume: I am a totally healthy 32 year old.

6.) The hardest part about mornings are: opening my eyes.

7.) My favorite medical TV show is: Grey's Anatomy.

8.) A gadget I couldn't live without is: my Kindle.  when i'm in the hospital I can just turn it on and download a book to keep me entertained.  my iPad is another gadget that I couldn't live without.

9.) The hardest part about nights are: realizing I can't get everything done.

10.) Each day I take: 26 pills... some prescribed, some vitamins, some OTC

11.) Regarding alternative treatments I: have not tried.

12.) If I had to choose between an invisible illness or visible I would choose: invisible.  it's nice to have a little privacy.

13.) Regarding working and career: I was forced to go from a full time case manager at a small non profit to a part time employee with no benefits because I was in and out of the hospital and constantly ill.  I now work 30 hours a week and spend my day off at various doctor's appointments.

14.) People would be surprised to know: I have the best of intentions.

15.) The hardest thing to accept about my new reality has been: I can't do everything.  I'm good for one fun activity a weekend.

16.) Something I never thought I could do with my illness that I did was: work.

17.) The commercials about my illness: there are none.

18.) Something I really miss doing since I was diagnosed is: shitting in the toilet.

19.) It was really hard to have to give up: all the fun stuff I want to do.

20.) A new hobby I have taken up since my diagnosis is: making jewelry!  i absolutely love taking random pieces (someone's trash) and turning it in to a wearable piece of art (someone's treasure)! etsy has been my therapy.  www.rhubarb79.etsy.com

21.) If I could have one day of feeling normal again I would: go back to school.

22.) My illness has taught me: to never give up and be persistent.  doctors don't always have all the answers because, like me, they are human too.

23.) Want to know a secret?  One thing people say that gets under my skin is: "God has a plan."

24.) But I love it when people: give really, really good hugs.

25.) My favorite motto, scripture, quote that gets me through the tough times is: "it will be alright in the end.  if it's not alright it's not the end."

26.) When someone is diagnosed I'd like to tell them: "I totally get it."

27.) Something that has surprised me about living with an illness is: how strong I actually am.  strength doesn't always have to be physical.

28.) The nicest thing someone did for me when I wasn't feeling well was: listen.

29.) I'm involved with Invisible Illness Week because: it's time to be visible.

30.) The fact that you read this list make me feel: honored.

When doctor's meet me they congratulate me on being a fantastic patient.  A patient that pushes the limit and makes them think outside the box.  The problem?  Most doctor's don't think out the box.  They see you for 15 minutes (if you are lucky) and decide (a) to put you on a new medication (b) order another round of blood work or (c) refer you to a different doctor.  No one knows what is wrong with me.  My colon broke so now I have an ostomy- why did my colon break?  No. One. Knows.  My esophagus broke so now I get it "stretched" every 6 months so I can swallow.  I have neuropathy in the mornings and Raynaud's in the winter.  I can't be outside in the summer because of my sick heart and I have kidney stones just hanging out in both kidneys.  

It may be "invisible" to you, but it's very "visible" to me.  

At the beginning of the month I there was a very unfortunate turn of events in the saga that is my life.  I have been on a forced vacation and have had several weeks to "think" about everything that is going on.  Things I have Learned:
1.) Some of my friends, are not my friends, and I need to accept this and move on. (and if I haven't heard from them by now, I REALLY need to move on.)
2.) This very private event has become very public and I will never be as open about things again.
3.) Discrimination is everywhere, and, it sucks to be on this end of it.
4.) My life changed in  30 minutes (or less) and it will never be the same.
5.) The best thing you can do for depression is GET OUT THERE AND HAVE FUN, despite how comfortable your bed is or what marathon is on Bravo.
6.) When one door closes, another one opens. (great advice from my amazing hubby)

D, as in Damnit

It was really hot today. Like too hot for Casey (which tops out at 80 degrees). Not only does my heart rate skyrocket, but, when I start to sweat that usually means my bag starts to itch and burn and I am minutes away from a leak.

Here is the irony... I need to be outside. I got some random blood work back that said I was extremely vitamin d deficient. Like real bad. What does a vitamin deficiency do to your body? Depression (check), fatigue (check), anxiety (check), muscle cramps (check), bone density loss (unsure). So, basically EVERY SYMPTOM I HAVE BEEN COMPLAINING ABOUT TO EVERY FUCKING DOCTOR. Why is it the pain management team        randomly decided to check my vitamin levels AND NO OTHER DOCTORS thought too? It's really starting to piss me off. I get a major organ removed and there was no one that thought to tell me the things to watch out for- kidney stones, dehydration, vitamin deficiencies, pills not digesting, fruits and vegetables not digesting, what to do when in swim, what to do during a stomach bug, what kind of clothes to wear, what to do when going through airport security..... The basic, everyday things. Why is there no team that sweeps in to tell you all that stuff- I learned everything on the Internet, which is great, don't get me wrong. Not only can I look up what movie is playing in my area, but I can also diagnose the growth on my right nostril (and, no, I do not have a growth on my right nostril- but I bet you get the point). I just don't understand why I pay doctors really good money, but the majority of the helpful information comes from Google. All I really need is a stethoscope to make sure I have bowel sounds and Wikipedia and I'm good to go.

Six

Things I Love Right Now:

*Nice People. Especially the Valet Gentlemen at the hospital and the Nurses that work at my Doctor's office.

*Cool mornings. Even though the afternoon temps are already getting to the mid-90''s the mornings make it all worth it.

*A working hot water heater. 5 days of ice cold showers and not being able to use the dishwasher make me very grateful it is fixed.

*Reality Television: Once a week Morgan and I curl up to watch "Toddlers and Tiaras" and "Dance Mom's Miami." It is those two shows that, in Morgan's eyes, make me look like the best mom ever and not a uber crazy one that makes their child wear flippers or practice dance 8 hours a day.

*hearing that Morgan was nice! and polite! when she goes over to her friends house. My work has paid off!

This last one requires a (lengthy) explanation: by the time I get home from work, usually between 5 and 6, I am physically and emotionally worn out. All I can think about is going to bed at 8; but, when I go to bed that early I tend to wake at 4 and can't go back to sleep. I have decided to problem solve my sleeping habits and make myself stay up until midnight and guess what? I slept, uninterrupted, from 12 until 7 am. So, the last thing on my list is sleep!  7 hours of glorious sleep!

Scorecard

So, like every week for one reason or another, I found myself sitting in my doctor's office waiting for the verdict on this round of symptoms. It's not like my PCP can do a whole lot- but sometimes I need the comfort of a regular family practitioner; as I suspected, his only idea was to order a round of labs and follow up with my GI and Colorectal Surgeon. I made it down to the lab and donated my standard 4 vials and got to do something new! gave a "on the spot" stool sample. The lab techs informed me that I could bring the sample back anytime this week because not all individuals were comfortable doing it right then! and right there! I told them that it was no big deal, to point me in the direction of the bathroom, and I would be out in a minute. I got a very confused look and decided to explain- that I have an ileostomy and giving a sample would only consist of opening my bag and sticking the Popsicle stick inside. Their response made my day, "we never would have known- you look like you are totally healthy. unbelievable that you have that!" 

Ostomy Prejudice: 0, Maternity Clothes: 1

Handicapped?

My vision of handicapped individuals: someone who walks with a noticeable limp, cane, or walker; someone who is in a wheelchair or has crutches. My vision of a non- handicapped person: me; someone who walks normally, who has no support from wheelchairs,    crutches or canes; someone who "appears" to be totally healthy. I know how I look from the outside: healthy, but a tad bit overweight. But, as I have learned over the past two years- you should never judge a book by its cover. 

Cancer: no hair;Broken Bones: a cast; Past Surgeries: a scar; Allergies: runny nose.    Autoimmune diseases: invisible- like a superhero. Autoimmune diseases rob you of      energy, appetite, sleep, and the hope of a perfect day- and, in most cases, you you would not be able to tell the difference between someone who has and someone who has not. Autoimmune diseases are painfully tricky- there is not really a "test" to diagnose, your doctor has to go based on their gut feeling and ability to put 2 and 2 together. And, if you have a totally lazy burnt out doctor, you may never know; you could live day to day    thinking (and having other people think) that you are either crazy, going crazy or one step closer to the psych ward. There are days I feel like I am in all three states, that I have to remind myself to take a deep breath and step back- I am not crazy.  I have a tricky illness- lots going on: terrible pain, heart, kidney and liver issues, migraines, autonomic nerve   issues... the list could go on and on.

                    

Hopefully, my story has a happy ending. But until that time, I am the proud owner of a new handicapped tag- you know, so when I go to Target or the mall at Christmas, I can park right up front. It's the little things.

I was stuck in traffic, of course I had to keep myself occupied.

Multitasking is my best friend. It's the peanut butter to my jelly. It's the milk to my cookies. It's the water to my ocean. I can't go 10 minutes and not have something (iPhone, iPad, Mac Book, Kindle Fire, etc...) in my hands playing. Am I important? In the grand scheme of things, nope. I am just a normal person that has been bitten by the technology bug; the symptoms include: twitching, boredom, sarcasm, and narcissism. I remember in high school when I would leave my house, go to school, and then go to work or after school activities- WITHOUT CALLING OR TEXTING ANYONE- and always with the promise of "calling you later." There was no Facebook (and thank God for that- I couldn't imagine having to survive the battlefields of high school with the added pressure of being popular on the world wide web), no Twitter, and very little blogs out there for the bored teenager to peruse.  We had to go to the library to "research" and coffee shops to hypothesize why our qparents wanted to ruin our personal life.  Life was so simple. I was completely and utterly happy and healthy. And, really it all boils down to that one word, "healthy." I could go to bed late, get up early, and only worry about... Nothing. I had no "real"" worries. I work at a small non-profit, Family Compass (formally known as the Child Abuse Prevention Center) with ladies I love and clients I adore. I have part time hours (due to illness), but in my heart I'm always there. We recently had our Celebrity Waiter Gala and I had the pleasure (and luck) of winning the iPad 3. My husband's first response was "now I'll never see you;" of course he said it all in fun, but I started to analyze why gadgets and technology are so important to me. I predict 50% (if not more) of my time is spent either sick/ not feeling well, waiting at the doctor's office for tests or appointments, or in the emergency room/ hospital. My iPad keeps me connected, my Kindle Fire helps me escape my world, and my phone helps me feel safe and grounded. If I'm home, I curl up on my couch with everything I need within arm's reach- gadgets (with chargers), pillow, Nap blanket (from Brookstone- to die for), phone, remote, and water. Do I spend way too much money on gadgets? Hell yeah I do (and if I could find a way to get my health insurance to cover it, I totally would. "Hey Dr. A- could you write me a prescription for the iPhone 4s? Thanks a bunch!"). The Internet is my group therapy; I have found so many young women who have gone through this; this life saving operation that changes you mind, body and soul. You have no idea how blessed you are- with every functioning organ- until you lose one to disease. It's like the game Jenga- you pull one block out and the whole tower suffers.

how are you?

I’m fine.

As I lay in bed yesterday having my monthly pity party, I realized that I am definitely not fine. I’m so tired (prolly because I’m chronically ill). I’m in so much pain (prolly because my gallbladder and liver are fucked). I feel so guilty (prolly because I have a healthy 10 year old daughter and an even healthier 30 year old husband and I have no energy to be good wife/ mommy).

I have many health issues, this is no surprise. I have a permanent ileostomy (google it- it’s pretty fantastic). I have been recently diagnosed with Triple A Syndrome (it’s even more fantastic than the ileostomy). All of my issues first presented as problems with swallowing food- it would get stuck, hurt, and I would have to make myself throw up to relieve the unpleasantness of the whole situation. So, for the past 3 years, every 6 months or so, I go in for a routine esophageal dilation. After I have the procedure done I can swallow my meds, my food, hell, even a whole rotisserie chicken. Unfortunately last year my normal GI doc left UT Southwestern and I am currently stuck with some asshole who doesn’t believe that the dilations are helping and refuses to do anymore. His suggestion: liquid diet. I’M 32 YEARS OLD. I have liquefy everything I eat? Seriously? This is so not ok.

The other “issue” I am having right now is my stoma. It’s long. Like, flaccid penis long.

Remember this guy? This is my stoma.

Unfortunately my stoma is working. Mechanically speaking, it’s perfect. I may be picky, but

I want it to at least look pretty and be shorter so I don’t have to change my bag ev.ery.day. And we aren’t even to summer- last year we had a record breaking heat way- my bag didn’t stay on 12 hours. It is exhausting.

Am I ok? Nope. But, I hope someday I will be- because I cannot live for 50+ years like this.

“Oh dear.”

"I hate..."

(found this on a blog that I regularly read... sums up my feelings- spot on)

No one would ever know what is in my bags. Unless one spilled over- which is a nightmare I have often. I pack up every possible medical bottle or device. I pack all kinds of makeup to make me look less ghostly. I bring emergency phone numbers, I bring EVERYTHING. (this, alone, is exhausting. I always leave the house thinking, "if I wind up in the hospital" will I have what I need? I def feel like a bag lady.)
I do love my life, but I hate alot of things lately.
I hate having so much to say, to blog, to share but my hands hurt too much to type.
I hate popping pills.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and spoons.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not
adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate having to defend that I am a good mother, daughter, sister, or friend. (or wife...)
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.

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.