My current “Normal”!

My stupid body has decided on a “new normal” and I am not happy about it.  I have not changed my dosing of my steroids (7am – 10 mgs HC, 11am – 5mgs HC, 2pm – 5mgs HC), but my days are becoming more difficult.  I wake up exhausted, even after sleeping all night.  I am napping every afternoon, or at least resting because I am so tired.  I don’t have the energy to take a shower or get dressed until late afternoon most days.  My evenings are better, seeming to have more energy and able to get something accomplished.  BUT, I still have at least one or two days a week that I am totally unable to do anything, and the day is spent in p.j.’s on the couch.  I have no idea why my body has decided to throw this new daily routine at me…………..I certainly have been worse………but I have definitely have been better.   The only explanation I can come up with is the change in weather……is that possible??

My bowels have been giving me the same problems as always, seeming to decide on a whim if they want want to trap me in the bathroom for hours, or not work at all.

I have decided to try and wean myself off my sleeping meds, I hate the nightmares and drugged feeling I get when taking Lunesta.  It doesn’t always work for me either, laying in bed staring at the ceiling for hours is so frustrating!

Getting off the seizure medication was the best decision I ever made. It made me spacey, drowsy, confused, dizzy and just so out of sorts!  Ten years on that medication is ten years wasted as far as I am concerned.

My cat is laying on the bed next to me showing me his belly…..must go and “rub da belly” now.

A Repost in Memory Of My Ma

If we had blinked our eyes, we would have missed it.

For three days we watched every breath she took.

For three days her laboured breathing kept us awake at night.

One night we all slept there.  Me in the recliner right next to her, Karen on the sofa bed, Joe on the couch, Billy on the floor.  When the sun rose, Karen and I changed places.

When Ma finally woke that morning we knew there was something different.  Her breathing was different.  Her gaze was different.  Her pain gone.  She was no longer restless. She slept peacefully.  She was there…but she wasn’t.  She was just waiting.

That evening her breathing had slowed and become quiet. Finally,  She calmly took her last breaths.  It was as if a window opened and she left on the breeze.  She looked like a sleeping child in her bed.  Curled up on her side holding her rosary and her beloved medal.   If we had blinked our eyes, we would have missed it.

It was heartbreaking to see her Grandson check for her pulse.

It was heartbreaking to see her Son-In-Law check again.

It was heartbreaking when Her other Grandson rushed in…..afraid of what he would find.

It was heartbreaking to look in my Sister’s eyes and know that it was over.  What we waited for…peace for Ma.  It was over.  I wished for celestial music or fireworks some proof that she was okay.  We all sat with Her for a long while, it seemed.  But it wasn’t long enough.  But she had “gone to the place that’s the best”…. and the happiest biggest family reunion ever.   And yes, she let us know she made it.

Spoons

Christine Miserando writes a blog named “But you Don’t Look Sick” where she covers topics that are interesting to people with chronic illness.  The title of her blog is a statement that anyone sick hates to hear, there is no way to respond without sounding ungrateful or bitchy.  There is no good response.  Christine wrote a wonderful article she calls “The Spoon Theory” explaining how she described her health difficulties to a friend. Her article has helped countless people understand what chronic illness, especially profound fatigue, can do to someone.  I have quoted her theory often and my family ask me about my “spoons” all the time. It makes sense. Please read her article.   (The Spoon Theory)

My fascination with spoons turned me to the internet looking for anything “spoony” to acknowledge my fondness for the simple spoon.  I discovered shirts, necklaces, magnets, wooden, metal, baby, gigantic, teeny and personalized.  But, my favorite find was a site owned by LeAnn Larson of Minnesota named,  Bent spoon Jewelry  I fell in love with her beautiful jewelry and bought one pronto.  She fashions pieces out of old silverware and I was thrilled when I found a bracelet made using my Mom’s old silver pattern.  I wear it everyday, it is meaningful for me because it reminds me of my Mom.

Sharing this talented Gal’s website is something I just wanted to do, I don’t know LeAnn personally and I don’t work for her.  Check her out if you are looking for ake a something unique.  Because, we can all use an extra couple of spoons occasionally.

mo

 

 

 

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.

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