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.”