Fellow Adrenal Patients….Learn From my Mistakes Hopefully

Being unprepared when you have Addison’s Disease, or any other Adrenal/Pituitary disease can be dangerous and even deadly. A car accident, any type of injury, a sudden illness, food poisoning or an unexpected emotional event can take you to a crisis situation quickly.  Learning something bad about a loved one, a heated argument with a co-worker or family member, even exciting news or happy stress can land you in the land of the ER. Often In the land of the ER there is no one that knows what to do with you and how to treat you.  You must be prepared.  Always.  Using the word “stress” has never gotten me anywhere in the ER…..tell them “Addison’s Disease”, “adrenal insufficiency” “cortisol deficient:, “steroid dependant”…..whatever will get the point across.

  • ALWAYS have your emergency shot with you and know how to give yourself an injection
  • DO NOT assume that paramedics in an ambulance will administer your injection….they won’t
  • DO NOT bring your injection to the emergency room and expect them to do it….they won’t
  • Be prepared if going to the hospital, chances are the doctors and nurses won’t know what to do with you
  • Keep a list of all your medications and supplements with you at all times
  • BEFORE going to the ER call your endo, ask him to alert the ER staff and give them instructions for treating you
  • Keep extra meds with you always, you might need some in a hurry
  • If admitted to the hospital, make sure you have your own steroids with you.  Nurses often cannot get to you on time with your oral doses.  If you need it…take it.  Better to take some extra than be without

If you end up in the ER alone, you need to be able to explain your condition to the Nurses and Doctors.  There are many forms and printouts on the Internet that you can keep with you and give to the ER to help them understand what is going on with you.  Make it clear that you need fluids and IV steroids RIGHT AWAY….you cannot wait for blood work results.  Hopefully you will never be alone, a family member or friend can get the point across sometimes better than a sick person. I am planning a trip soon, and will be flying alone for the first time since I have been diagnosed.  I plan on being over prepared.  I will be stress dosing, staying hydrated, and will be carrying emergency instructions along with my shot just in case.  My Husband has even talked me into getting wheelchair assistance in the airport so I won’t rushing and stressed out.  The long walk to the gates would probably exhaust me anyway. You can never predict when a situation can turn into a crisis, be prepared for anything….always.  Just like the Boy Scouts and Girl Scouts!   gs motto be-prepared

How do I Deal With Transition?

Life is a series of transitions.  As a woman, I have transitioned from one role to another many times, sometimes willingly sometimes kicking and screaming.

  • Single Gal to married
  • no kids to being a Mom
  • no health problems to chronically ill
  • in charge of my life and family to dependent on everyone for help

But, my recent transition has really been the hardest.  Going from a  house full of family to an empty nest.

The empty nest syndrome……I am stuck.

A lot of women my age are dealing with the same feelings.  No one needs us anymore, no one is opening the fridge to see what there is to eat, no one is looking for clean socks. The house stays clean, the bananas go rotten, no one uses all the space on the DVR, and it is so quiet in the house.  I hate it.

Both my sons have moved to Colorado and I am still in Chicago, yes with my wonderful husband Joe, but I miss my kids.  I miss the electricity and excitement that entered the house with my son Dan.  I miss the long talks and the goofy laughter with my son Bill.  These boys took care of me and entertained me.  I lived through them for years.  What is more exciting that seeing your son on stage playing guitar in his band in a jam packed bar?  What could possibly be better than watching your son put on a uniform, go to work and drive a fire truck sirens blaring and lights ablaze?

Now I relish in their daily lives and accomplishments through facetime and facebook.  I am letting go a little more each day, and with each step I am kicking and screaming.  Every Mother goes through this……right?

The hardest transition of my life.

 

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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