The Name Game – A Contest

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I’m asking all my creative Friends to help me find a new name for my blog.  I’ve been writing about my adrenal disease for years, but have really avoided discussions about my digestive issues. It can be embarrassing to talk about “poop”, but let’s face it…everybody poops!   Crohn’s Disease can be debilitating and often harder to deal with than my other illness.  My adrenals have been behaving, more or less, so I have nothing to complain about….except my poop problems. I want my blog’s name to reflect my challenge with both Crohn’s and Addison’s Disease.

So here goes.  Whoever comes up with a great name……wins! The winner will receive a box of cheesy Chicago memorabilia straight from Walgreen’s and the Dollar Store…..we have good junk here in the Windy City.

Submit your idea in a comment…..asap….and I will pick a worthy name and send out your prize!

Whats in a name!

Originally posted on Living with an Addisonian:

Apparently a lot.

Its not just what IS in a name, but what isn’t.

8% of those suffering Adrenal Insufficiency are because of an Autoimmune condition.  Generally, if it’s autoimmune you will have other conditions as well.

These conditions need to be taken into account when drugs are prescribed.

In New Zealand we have Government Subsidies to pay for medications.  As long as the medication is on the list approved by Pharmac then it costs $5.00 each time you get a script.  Derek normally gets enough Hydrocortisone for 3 months at a time.

The catch with this is he is limited to one brand, and only one brand.

Derek’s Adrenal Insufficiency is not autoimmune thankfully, but his Antiphospholipid Syndrome is.  With Derek’s warfarin he is given options of original or generic brand.  There are two option, so if he has problems or side effects on one, he can change to…

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I’m That Lady You Hate to Drive Behind

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I’m THAT LADY.  I drive the speed limit.  I reduce my speed in school zones.  I stop completely at stop signs, and never blow through yellow lights.  I use my blinkers, and yes I probably leave them blinking for a mile or two after I’ve changed lanes.  I am polite and let other drivers merge when needed.  I don’t fight over parking spots in the mall lot and I never park illegally.  I don’t drive in the “go fast” lane while doing just the speed limit, and I don’t pass trucks on the right.  I don’t follow too closely.

I listen to the “oldies” station and sing along with both hands on the wheel. I do not text, tweet or talk on the phone while driving.  I haven’t had a traffic ticket since my teens, and have never been in an accident that I have caused.

I am a good driver.  I have little patience for crazy drivers who speed and switch lanes constantly.  I yell and swear at stupid people and I may or may not flip the bird occasionally.  YES, I am that driver you hate to drive behind.  I am that Senior Citizen Lady with the peace sign hanging from my mirror and the bumper sticker that reads “Woodstock Forever”.  Be afraid young driver…..I will make you late for school, I will make you mad because I am going the speed limit and you will speed up to pass me. But beware young stupid hot-headed driver…..you will eventually get stopped by the police and get a slew of tickets.  And I will happily drive on with my radio blasting and my turn signal blinking……still.

My Annual Christmas Post

ma santaOur Family has a secret.  It’s a pretty big secret.  But I think it is time to tell.

You see, our Mother is Mrs. Santa Claus.  The real deal.

In the late 1960′s my Mom, dressed as Mrs. S.C, would go to the homes of her friends, the Ladies in her Womens’ Club, and hand out parent provided gifts.  It was very exciting for me because I was allowed to go a few times.  My SIS would drive and I would sit in the back seat in charge of the gifts.  As time went on  I was able to drive her around town, and eventually we took my kids for the excitement also.

At first , she had a simple red cape and a Santa hat, but as years went by her costume got fancier and fancier.  The current suit is  a red corduroy cape trimmed with fluffy white fleece.  Her floor length skirt was trimmed with fleece all around the bottom, with her little black boots sticking out.  White gloves and a perfect Santa hat on her head rounded out the look.

She loved children.  She had five of her own, and was a school librarian at the local School District.   She appeared at village functions, my kid’s preschool, and random houses of the children who saw her a child.  They had their own children and they wanted their kids to see Mrs. Santa Claus.

My Mother changed into another person when she put on the costume.  Her cheeks got rosy, she walked differently and she seemed to stand taller than her five feet.  Her smile was huge, her eyes twinkled and when she put on her hat….she was the real Mrs. Santa Claus. Her jingle bells announced her arrival to all that were waiting for her.  She just loved doing it.

When I first became sick in 2001, I missed a lot of things including the fun of Christmas, but I dragged myself downstairs one particular Christmas Day  because of my family’s pleas. Everybody opened all their gifts and oohed and ahhed.  Finally, I was given a big box and told to open it.  I tore off the paper and pulled all the tissue paper out of the box.  Inside was something I had been asking for years.

A professional portrait of Mrs. Santa Claus

We lost our Mrs. Santa in October 2010.  While clearing out her condo, we found the Mrs. Santa suit.  My SIS and I just sat there holding it.  It is packed away in a special box now.

This suit will become a family heirloom.  Missing you at Christmas Ma.

Anniversary

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Twelve years ago this month I was diagnosed with a condition that would change my life completely. With a “diagnosis” everyone assumes there is a “cure” and that life will get back to normal eventually. But, that didn’t happen. I understand that I am very lucky that my condition is treatable. If I take care of myself, take my medications and see my doctors regularly this disease shouldn’t shorten my life.  But, it has changed my life.

I cannot get used to the fatigue.  Over powering fatigue.  Debilitating fatigue.  Can’t sit up fatigue.  So weak you hold your pee until it hurts fatigue because the bathroom is so far away.  Feel like you have the flu fatigue.  Miss every party and get together fatigue. Frustrating fatigue.  Hard to cope fatigue.  Impossible to explain fatigue.

Every night when I go to bed I think to myself that tomorrow I will feel better. Sometimes I do….and then I must remind myself to not overdo it…and if I do I will pay for it for days.

Happy anniversary.  I am having cake.

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Another day

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My hubby Joe has been home since Friday doing some DIY work.  Because he has been spending so much time in the house he has been re-aquainted with the unpredictability of my day to day activities.  He has dealt with my illnesses along with me since 2001, and has been there through everything.  He understands that my energy level can change quickly.  He understands that I cannot leave the house if my Crohn’s monsters are visiting.  He understand that I might spend the morning sleeping, and then still need to rest in the afternoon.  He understands that my pain levels can be minimal for days and then be doubled over with cramping and spasms with no warning.  He knows that planning something doesn’t mean it will really happen.

Today I am totally exhausted.  I changed the sheets on the bed and it knocked me out.  I am pissed at my body today.

I Miss My Friend

My Mother passed away three years ago today.  A repost of an oldie in memory of her.  

A year ago today I lost my oldest and dearest Friend.  My Friend was always there for me…57 years and 31 days…always within reach and available.

While growing up, my Friend was my greatest cheerleader.

My Friend taught me about life, love, acceptance, empathy, loyalty and persistence.

My Friend and I could talk about anything, and my Friend always gave the best advice…most of the time.

My Friend taught me to love reading, how to understand baseball, how to make my own clothes, how to sooth a two-year old with a fever, how to frost a cake, and how to make deviled eggs.

I miss my Friend more than I could have ever imagined.  I still go to pick up the phone to share some exciting news or gossip with my Friend, and then I remember that my Friend…..is gone

My oldest and dearest Friend was my Mother.  She took a piece of my heart when she left, but left so much here for me to cherish and remember.

She was there when I entered this world.

I was there when she left this world.

This is the way life goes.  I wish life was easier.

the tomorrow games

mo:

A Good Read.

Originally posted on Phylor's Blog:

gate to the dykes, wolfvilleThe tomorrow game; we all play it. Tomorrow, I’ll clean the house; tomorrow, I’ll send her an email; tomorrow, I’ll write; tomorrow, I’ll smile; tomorrow, I won’t hurt so much; tomorrow, I won’t be depressed; tomorrow, I’ll follow my diet; tomorrow, I’ll pick flowers; tomorrow, I’ll read a book; tomorrow, I’ll give them a call; tomorrow, I’ll give a hug; tomorrow, I won’t be so judgmental; tomorrow, I’ll try and get well; tomorrow, I’ll say “I love you;” tomorrow, I’ll believe in myself; tomorrow, I’ll tell; tomorrow, I’ll feel alive; tomorrow, I’ll stop crying; tomorrow, I’ll go for a walk; tomorrow, I’ll cut back; tomorrow, I’ll do something; tomorrow, I’ll matter; tomorrow, someone will love me; tomorrow, I’ll change the world; tomorrow, I’ll wash my hair; tomorrow, I’ll care; tomorrow, I’ll . . . .

(Tomorrow, I’ll write shorter sentences, lol)

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What? Me? Bitchy????

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Last night I was attempting to find something on the Internet.  I was tired and getting confused.  I was frustrated.  After a while I started to swear at the computer, and my Hubby asked me if I was getting BITCHY?  (I thought….watch out…I’ll show you bitchy Buddy).  Later he apologized. I accepted.

But I realized that my many moods sometimes are misinterpreted by others, especially the fabulous Hubby.  Before I got sick I was very even-tempered and easy-going, but I know that my mood fluctuates now depending on how I am feeling.

Chronic illness is a pain in the ass.  I never know how I will feel when I wake up in the morning.  I can’t make plans because if I do, I might have to cancel.  I can’t go out shopping alone, what if I can’t drive home?  Shit, I can’t go anywhere alone because I might get lost.  No, I am not a hermit or loner, I am just not up to par most days.

As far as reading my moods, I have learned that I need to make things easier for people around me.  A frown or a growl doesn’t mean I want to bite your head off, it might mean I am nauseous and I’m afraid I am going to puke get sick.  Laying on the couch with my eyes closed doesn’t mean I am avoiding you, it might just mean I am really dizzy. Staying in my room under the covers doesn’t mean I am anti-social, it might mean I am just too sick to come out of my cocoon.   And yelling at the computer doesn’t mean I’m being bitchy, it might mean I am frustrated that I can’t think clearly through the brain fog.

Maybe I will make flash cards to hold up that will let anyone around me know my mood at the time.  I think that will work.  I will never be called “bitchy” because I have been in the bathroom all afternoon with a diarrhea fit or because my joints have been screaming at me all day.

Thank You for understanding.

R.I.P. Fridge

Our refrigerator up and died a few days ago.  It was a slow death.  One day it got confused and poured water into the broken ice maker and it ended all over the kitchen floor.  All the drawers and shelves were wobbly. If you took the chance to open the door you needed to be prepared that your feet were going to get hit by a flying yogurt or worse….the entire veggie drawer and the contents. Then the ice cream started to melt.  That was the last straw.

So, we took a trip to our local Menard’s store, the wanna-be Home Depot of the midwest.  Mr. “I can’t make a decision” actually agreed on my favorite (!!!) and we happily went to the front to arrange delivery.  Then it hit me.  Weakness, dizziness, dry mouth.  The “I am going to faint if I don’t sit down now” feeling.  Thankfully Joe found a chair for me or I was going to lay down on the floor.  People look at you funny when you do that.

You would imagine that after twelve years of this disease I would be prepared for this to happen every so often. Nope. Getting pissed off upset doesn’t help at all.  But of course I did.  Really really pissed me off upset.   Then I was good for shit nothing the next day.  

The refridgerator will be here Wednesday.  I hope I’m awake so I can open the door for the delivery men.

AHHHHHHHHH  Mr. Addison, I love you!

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