Goodbye Old Friend...

The other day I had to say goodbye to an old friend...

To some this will sound silly, but to others it will make perfect sense. After many years of faithful service my trusty Kuhn Rikon vegetable peeler has fallen apart...

This wasn't just ANY peeler, it was one of my first purchases from a gourmet cooking store...I paid more than anyone should EVER pay for a peeler.  It was made in Switzerland and could only be purchased at Williams Sonoma via catalog or in the store...this was long BEFORE the Internet and Amazon.com days.

It was one of the first U shaped peelers available in  the USA, she was as sharp as could be and felt great in your hands.  No old fashioned swivel peeler could compare.  I could peel at the speed of light!

As someone with a neuro-muscular disease replacing her has become an arduous task...There are so many things to consider when you have weak hands...

Not just any peeler will do. It must fit in your hand just so, the handle can't be too bulky, but can't be too thin either...A soft grip is easier to hold than a hard plastic grip. ...will it make your hand tired when you use it, will it slip and cause you to cut yourself, will it withstand being dropped on the floor and get run over with a walker or powerchair?

So will it be a new Kuh Rikon, an OXO Good Grips, or a Kitchen Aid...only time will tell



The Face Of Myasthenia, When the MONSTER Strikes

Sorry I haven't posted... 

There was so much I wanted to say...
But MYASTHENIA GRAVIS got in the way...

It's HARD to TALK, when your tongue feels like it's bigger than your mouth and doesn't move to correctly to form words...

It's HARD to READ, when you can't keep your eyelids open, or you lose focus to see the printed page...

It's HARD to WRITE, when your hands don't have the strength to hold or move a pen...

It's HARD to BREATH, when your chest doesn't rise and fall deep enough to get a real breath...

It's HARD to WALK, as you struggle to lift legs that feel like you're wearing cement blocks instead of shoe's, or your legs fall out from under you causing you to fall to the ground...

It's HARD to EAT, when your jaw gets so tired you can barely chew...

It's HARD to USE your COMPUTER, when you need to be propped up in a recliner with pillows to keep your head in place, your elbows propped up so your arms don't fall to your sides and then can't lift them back up without the help of others...

It's HARD to DRIVE, when you can't sit upright in the seat without being strapped in like a ragdoll,  keep your head up without a neck brace or you raise your arms to steer the car...

It's HARD to feel USEFUL & PRODUCTIVE, when you need help dressing, bathing, and having someone help you sit up in a bed because there is no strength in any of your muscles to do even the most basic of daily functions...

It's EASY to CRY, when you feel alone and helpless...when you think no one understands... when you can no longer help care for your nieces like you did before...
                    
It's EASY to LIVE with MYASTHENIA GRAVIS, when you have been blessed with wonderful family and friends you can count on no matter what...

It's EASY to LIVE with MYASTHENIA GRAVIS, when you have faith that GOD will help your doctors and researchers find a cure for neuro-muscular diseases in YOUR lifetime...



BEFORE MYASTHENIA (4 YRS AGO)



SINCE MYASTHENIA (TODAY)




I wasn't able to get a full picture of myself this morning, it has been a rather difficult few weeks. I was propped up in my chair with my cervical collar holding up my head. I couldn't lift my arms high enough to get a better picture!  So no hair or make-up, it been a total pajama day! 

 

This isn't just MY MG life, it's my families and those of other Myasthenics and their families too!
 To learn more visit Myasthenia Gravis Foundation of America

The Butterfly House...

Haley came to visit a few weeks ago, my sister and I wanted to do something different so we decided to take a trip to the Butterfly House at the Rutgers University Earth Center.

It was a beautiful Sunday afternoon, although it was quite hot there was a beautiful breeze. It made the heat quite tolerable.

The Monarchs were floating from flower to flower...If you looked closely you could find butterflies in various stages of life...cocoons were hanging from the leaves of plants, some were empty, while others awaited the emerging beauties.

 

 

Coneflowers, Sunflowers, Butterfly Bushes, and many other served as places for the butterflies to sun themselves, rest, and enjoy the sweet nectar the beautiful blooms had to offer.

 



Sunflowers

 

 

Clematis

 

 

Taking a sip from the Butterfly Bush

 

 

We also spent a little time visiting the Children's Garden...There were several areas for children to explore and play amongst the various plants.  Haley loved the Teepee made of Sunflowers and the tunnel covered with squash vines.  She was so excited to see the tiny squash, because it was so early in the growing season most were only about 2 inches long!

 

 

The grounds of the Earth Center is also home to the Master Gardeners program as well as an ecology center.  It's beautiful place for a picnic, a hike amongst the nature trails or just a quiet place to spend an afternoon.  We can't wait to visit again!





It's Been a Rough Couple of Weeks

Things have been very crazy at my house for the last few weeks...

My beautiful niece Theresa had to have hip replacement surgery a few weeks ago.  She's a very happy smiling girl on most days...

But not long after returning home from surgery she became fussy and was experiencing a great deal of pain...She returned to the hospital for follow-up care. It was soon discovered that she had pancreatitis, her doctors are working very hard to find the cause of her problem...she is receving nutrition through a special IV line, her newly replaced hip has also dislocated several times...The doctors have placed her in a special cast to keep the hip in place...My sister is a strong, caring Mother, but sometimes it's so very difficult.  She loves her little angel more than anything else in the world...It breaks my heart that I can't be with them...

Love you so very much my little angel...

Sending good thoughts and prayers your way...

God has you in his care, all will be well



The Scent of Spring...

Here in NJ we experienced a very mild winter and quite a few above average temperatures this spring.  Today is the exception, we are exactly where we should be temperature wise. 

I turned on the coffeemaker first thing as I usually do, the smell of freshly brewing coffee began to fill the house.  I opened the back door to let the suns rays warm the kitchen when I was overcome by the smell of lilacs drifting on the morning breeze.  I couldn't help but take a deep breath...spring has finally come to my backyard!

I have been blessed with a beautiful lilac bush courtesy of my neighbors.  I've never planted one, for many years their bush hung over my fence and I clipped bouquets to my hearts content.  Several years ago some branches made there way under the fence and they have spread and grown stonger, as a result I now have a beautiful lilac bush to call my own...Time to cut a bouquet for the kitchen table...

A Few More Projects...

Here's a quick look at my March projects for

the Scrappers Cove  drawing.

The card was made using paper from My Minds Eye's Lost and Found Collection,

I love the vintage look of this paper.

For the layout we were given paper from Authentique and

Bo Bunny. I normally don't use a lot of purple when I scrap, but Idecided to play off the purple trim instead of the blue floral print.





It's Been a While!!!

It's been quite a while since my last post...Honestly sometimes I feel at a loss for words.  I follow some very inspiring people, they have such a gift for words.  For me, it's not so easy.

Things are about the same on the MG front, no worse no better. For that I am truly thankful.  So today I'll share some of my recent scrapbooking and card making projects.

The Myasthenia Gravis group I belong to exchanged Christmas cards this year, MG is also called the snowflake disease because like snowflakes, MG affects everyone differently so I used one on the card...The snowflake was removable so it could be used for another purpose.

Our local scrapbook store holds a monthly drawing for a gift certificate.  Here's my January entry. This layout features my niece Theresa, she just LOVES the snow.  Although she can't play in the snow like others she enjoys when you toss snow at her, she laughs and smiles so much!

I also submitted this card for another drawing.  I LOVE this sentiment...I try to find something to be thankful for everyday, so why not celebrate!

My submission for February is about Love & Friendship.

The pictures are of my sisters, my nieces and myself.  The sentiment "A Friend Loves at All Times" is from proverbs. It was a free download from Dee's Bugaboo Boutique , she is creates beautiful scripture word art to download every Tuesday.

I'm not very big on Valentine's, but here is what else I entered into the drawing.  I didn't win this month, but my sister Gae did!

As always, thank you all for dropping by now and then.