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

Six Years Ago...

Six years ago today I lost someone, 

I lost a friend, a confidant, a mentor, I lost the most important person in my life, I lost my mother.

She was kind and gentle, or a force to be reckoned with!

I learned many of life's lessons from her...how to treat and respect others, to be true to myself, have faith in God, no matter what hand I was dealt, and to be responsible for my own actions.  

When we shopped she always bought extra food for those in need.  The bag was always left on the back porch of the rectory without any fanfare.  There was never a need for recognition. She prayed for those who were in need of God's blessings. She always looked after our elderly neighbors. She visited them, brought them meals and treats.

She worked as a nurse, sometimes caring for those forgotten by their families.  She cared for the elderly, mentally and physically disabled, and for prison inmates.  No matter what their affliction, they were cared for with kindness and compassion.  

Losing her has gotten easier over the years. But now and then a song will come on the radio, or I'll be cooking one of her favorites and I begin to cry. Sometimes out of sadness, other times, joy and happiness. I miss watching Jeopardy and crocheting with her, mother daughter vacations and lunches are now a pleasant memory.  She is always in my thoughts, I talk to her daily.  I find comfort in knowing she is resting in God's hands...

 

Harriet Grace

August 27, 1940-Ocotber 18, 2005 

 

 

Crocheting & Praying...

Crocheting and Praying...
Two things I rely on daily. Praying comes easy to me, but crocheting not as easily as it once did.  There was a time before MG when I could crochet for hours and hours.  Now with MG, I crochet in short spurts. I work around medication times and muscle strength. I find both to be meditative and contemplative. This is a great time for me to say my rosary. With each cross stitch I make, it reminds of Jesus on the cross and the sacrifice he made for us. As the afghans begin to grow I think of the family, friends, loved ones, and complete strangers that will be warmed by the love and faith that went into each stitch. 

For every project I complete I am truly thankful. Although I'm not as strong as I once was, I am blessed to be able to continue to create.These two projects were completed yesterday. The striped lapghan is a gift for a friend of my sister's, who resides in a  nursing facility. 

The other, I call "Bubblegum" was meant as a Christmas gift. Life got in the way, so now it will be a "just because" gift.

 Thank you to all my friends for your continued prayers and well wishes, they are truly appreciated.

A Week of Struggle...

I'm not quite sure where I want to go with today's post.  

I've had many down days recently, it's so hard to always put on a brave face in spite of MG.  Sometimes even the simplest task is difficult.  I can still care for myself, but I find a need more time to rest between tasks.  The way I do everything has changed, while some changes are minor some are not.  I almost always need to sit to prepare meals, my legs don't have the strength to hold me like they once did.  The weakness in my arms and shoulders make mixing, cutting, and sometimes just holding something difficult.  Housework in general has become a chore (pun intended), there isn't something that doesn't tire out one part of my body or another.

I'm not sure if my medication isn't working as well as it once was, or if there has been some progression in my MG .  I see my neurologist again in May, there are many things I feel I need to go over with him.  Compared to some, my MG struggle is small.  I have met some strong people, their struggles have been many. I pray daily for the strength and courage they exhibit daily. Chronic illness is no picnic!


One thing I've never struggled with is my faith.  No matter happens in life there is a reason. I've learned to accept whatever obstacle God has placed in my path. There have been years of chronic illness, and family struggles that I pray others never have to experience.  But with a strong belief in God I have weathered many storms.  I hope I am strong enough to attend Holy Week services. It's a great time for renewal and reflection, and most of all to give special thanks to Jesus Christ for sacrificing his life for us. 

So this week when I pray my Rosary I will ask for more strength and courage. I will also offer thanks and prayers for those that struggle daily. Some with illness, some with financial or personal struggles. I know with God's help all things are possible....

I'll close by wishing all a Blessed Palm Sunday, as always you are all in my thoughts and prayers....

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!

A Perfect Morning

This morning was so beautiful, it was perfect for a morning walk.  The sun shone brightly, the sky was full of big puffy clouds, a crisp fall breeze kissed my cheeks as a made my way through town.  I couldn't have asked for a more perfect day for a walk.  The only thing missing was my camera.  I must remember to carry it tomorrow. The colors of the leaves are gorgeous!

Thank you God for another beautiful day!