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

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



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.

Life is a Struggle...

The last few weeks have been a struggle for me.

My youngest sister passed away at 39 years old.  Up until recently she lived with me, my other sister and their two daughters.  Sadly she died alone, in her small apartment away from family and friends.  As young children we shared many happy times.  But as we got older she became more distant.   Our relationship was strained, I never gave up hope we would repair the damage that tore our family apart.  Much to my regret it was not to be.

She left behind a beautiful, loving daughter.  She struggled with being a single parent.  My sister and I were there to help, but it's not always enough.  She survived kidney cancer, but struggled with substance abuse and mental health problems.  There were times I felt so lost and helpless, she wouldn't let me help her, no matter what I tried to do.  

My niece has been living with my sister and I for quite some time.  It broke my heart when I had to tell this sweet, loving angel that her mother passed away.  I know she is struggling too, she keeps telling me how mad she is that I ruined her most perfect day.  We decided to make a memory quilt together, we've started collecting fabric from some of her mom's clothes.  One of her shirts had a beautiful poem about butterflies on it, this will be the center block.  My niece is very excited about remembering her mom this way.  

Life is full of struggles and hardships.  Sometimes we overcome them, sometimes they get the best of us.  Right now my daily struggle with Myasthenia Gravis seems very small when I compare it to the struggle of an eight year old coping with the death of her mother...

My sister is resting in heaven now, there are no more struggles for her.

Rest in Peace Nickie

What Might Have Been...

Yesterday would have been my parents 54th wedding anniversary.  I often think about what might have been if they were both still living today.  I think about them at the oddest times. Sometimes it's something I've seen on television, a song I've heard on the radio, or the smell of something cooking or baking that sends a rush of memories my way.  They can be sad or happy but I embrace them just the same. 

When they were younger there were times when their relationship wasn't the best. But in time and with determination and hard work they grew into a very loving couple. They were friends and companions during sickness and health right to the very end.  

As I look back on my childhood, I know I was blessed with two of the best parents in the world. We were raised to be independent and respectful of ourselves and others. We were nurtured and loved.

Both my parents spent a large portion of their lives living with the daily burdens of chronic illness. It was never "why me" but what can I do to enjoy my life and family to the fullest.  So as I learn to adjust to a life with Myasthenia Gravis, I think of my parents daily struggles. I try not to live the "why me" life. I want to live the fullest life possible with Myasthenia Gravis coming along on my journey...

Happy Mother's Day !!

I have so many wonderful memories of my mom. She was a firm but fair person. She respected our desire to be individuals. We got along so well, we crocheted and crafted together. I learned care and compassion for others from her. Like so many mothers she did without so we always had what we needed. We never knew hunger, we never wanted for affection. I was truly blessed to have her for my mother and best friend!!

She always asked for the same thing from us each Mother's Day. That was to be good, sometimes that was easier said than done.  We felt we needed to give her more than being good. We gave her flowers and planted gardens, we drew pictures, wrote poems, and even placed each other in trash bags with giant bows on them to give ourselves as gifts! But one of her favorite things was this poem, it's kind of silly but it speaks volumes about mother's.

So this poem is for you Mom...

M is for the many things she gave me.. 

O is for the other things she gave me..

T is for the thousand's of things she gave me.. 

H is for the hundred's of things she gave me..

E is for everything she gave me..

R is for the rest of the things she gave me..

Put them all together they spell MOTHER, the one who gave the world to me!!

Happy Mother's Day in heaven!

 

     

Funeral for a Friend...

Haley held her first pet funeral Thursday. She purchased a few new fish friends to share the tank with Goldie, her Fall Carnival goldfish.  

She was lucky enough to win Goldie a little over two years ago. This goldfish has grown from a small feeder fish to a massive four inches long!! So out of the blue she decided Goldie needed company.  My sister took her to the pet store, Haley picked three different "tank buddies" for Goldie. She was so excited she couldn't wait to put them in the tank. My sister and I kept a close watch on them, we weren't sure if Goldie would decide to have a Sushi lunch, or enjoy the company of new friends. All seemed good until about two days in, this one little fish started to keep to itself, it wasn't really eating either.  We decided the little thing needed to be transferred to FICU (fish intensive care unit). She was rushed to FICU and kept under careful observation for another 24 hours. Sadly the little thing didn't make it.  She join our Lord in Heaven while Haley was at school. 

She knew there was a chance the little fish wasn't going to pull through. She had already started making funeral plans just in case.  Well needless to say it was pouring buckets the day of the service! We decided to postpone things until the next day.  It was cold and overcast, kind of like those funeral scenes you see in the movies.  She picked a spot under the bird bath in the round flower bed for the fishes final resting place. We donned our garden gloves and moved the patio block the bird bath rests on. Haley lovingly dug the grave, she wanted it to be "just right", she carefully placed the fish wrapped in it's paper towel shroud into the hole.  "Okay now bow your head" she said. She spoke from her heart and asked God to keep her fish safe, and thanked him for letting her have such a nice fish.  She also asked that he keep her other fish safe! We made the sign of the cross, and replaced the patio block.

Before you know it she was looking to dig the poor thing up to see if it had started to turn back into "natural resources" yet. I did everything I could not to laugh!  The poor thing was only in the ground five minutes. We had to explain the process doesn't happen that fast. I think she was a bit disappointed.

Rest in peace little fish, rest in peace!

Eight Years Ago Today....

It was eight years ago today I lost my dad.  He had been ill for many years, he battled cancer three different times.  He was strong, stubborn, and as feisty as the day is long!  I lost a strong arm to lean on, a shoulder to cry on, and I lost a friend and confidant. 

 He was a hard worker who always provided for us. I remember him working three jobs to make sure we always had what we needed. We had many fun times, he taught me to ride a bike, motorcycles and horses. He even put up with a bunch of screaming kids in a movie theater just so I could see "A Hard Days Night" and "HELP". He loved to blast the radio in the car, he knew all the words to all the songs we listened to!! 

 There were road trips to visit family and friends. He would take us by the bus load to zoos, parks, lakes, and museums. But my favorite was riding with him on his bus route to the Pulaski Day Parade in NYC. I loved the dancers, the Babka, and the Pierogies.  But what I loved most was spending father and daughter time together.

It's funny how something I see on TV or a song I here on the radio will make me think of him. I don't shed as many tears as I did. But now when I do they are tears of happiness, because I have so many wonderful things to remember...

I LOVE and MISS YOU, DAD

Happy Birthday Haley Rain!!!

Happy Birthday Haley!

 Today Haley turned eight years old!  She was so excited she could hardly control herself.  This year she choose a custom designed ice cream cake from "The Ice Cream Depot" . It was filled with all her favorites, espresso chip ice cream, cookie crumbs and fudge filling.

 It was so nice to have her with us for her birthday this year, we missed her so very much last year. It was very hard not to celebrate with her.  Gae and I hope that never happens again, there are times when she tests every bit of our patience.  But we can't imagine not having her with us everyday.  Theresa and Haley love each other very much.  I'm sure God had something special in mind for all of us when he let two special young ladies into our lives. For that I will always be grateful.  So Happy Birthday to my special helper, no one else helps me cook, bake and vacuum the way you do!!

Special Blessings

My niece Theresa Anne is eleven years old today!

She has a very special place in all our hearts. A child full of love and happiness, she has a great big smile and makes everyone around her appreciate even the smallest things life has to offer. Every day with her is a blessing, I can't imagine life without her. 

My sister has not had an easy life caring for Theresa, there have been many long nights in hospitals and trips to specialist. What mother wouldn't want a child who could run and play, call your name, or reach out and give you a hug. Theresa may never do any of these things, but we love her for the joy she brings with her beautiful smile and her silly laugh. So on this special day I'm asking God to continue to bless you with many more happy days for all of us to enjoy.

My Life is a Blessing!

The past year has been difficult for me and my family to say the least.  A very special part of our family was away from us for awhile, and I have been dealing with a life changing medical problem.

During the past few weeks things have begun to turn around for the better!  My beautiful niece has been coming home for weekend visits. It's been such a pleasure to have her home with us again, I can't wait until she returns to us for good!  My neurologist has increased my medication, the improvement has been a godsend!  I may never be my "old" self again, but I'm learning to except the limitations of my "new" self.

I am so very grateful for the love and support of my family and friends, for without them daily life would be so much more difficult.

Remember, each and everyday day is a blessing. Good or bad, it doesn't matter. Enjoy the smile on a little child's face, the sound of their big feet running across the floor, or the picture they drew for you that day.  

There are so many blessings to be found all around us, all you have to do is look!