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.