New Year, New Me!

New Year, New Me!

New year, new me! We've heard that before. A new year of fresh starts and new beginnings. Resolutions meant to spark change in our lives, improve what we think needs to be "fixed", ways to make us better people, etc. This isn't my style! In some ways I'm more of a fly by the seat of my pants person. If I don't make resolutions, I won't be disappointed if things don't turn out as planned. 

What I have noticed is I'm becoming more of a "what if" type of person. What if my MG stops responding to treatment, what if I'm becoming a burden to my family, what if I'm not strong enough to keep my family together, what if I don't have the strength to go on. 2019 was a struggle because of the "What If's" and so many other things. My parents, and youngest sister passed on many years ago, my niece Theresa passed a little more than a year ago, my brother and sister in law moved cross country, and my other niece is making it her mission to challenge me every minute of the day.  The feeling of lose and loneliness has totally consumed my entire being! I've struggled to find joy in all the positive things that 2019 had to offer. 

Today's post is the first of what I hope to be many in 2020. My place to be semi-anonymous, hide behind the curtain that is the internet, yet still feel secure in sharing the ups and downs of my life. MYASTHENIA GRAVIS and DEPRESSION be damned! 

Unhappy Anniversary!

How do you mark an anniversary you'd rather forget?

Five years ago this week my life as I knew it changed forever. It was a week that would lead me down the path to chronic, incurable illness, to a life with Myasthenia Gravis!

When a life is changed because of illness or an accident one can't help but remember. Some celebrate a new chance at life, while some reflect on things they have lost, others fall somewhere in between. I'll admit, I find it difficult to celebrate a life with Myasthenia Gravis. But I also don't spend every waking moment feeling sorry for myself.

I've taken a few rides on the whoa is me train, and been the guest of honor at my own pity parties...I don't believe I acquired Myasthenia Gravis for some bigger purpose, to punish me for wrong doings in my life, or to strengthen my faith. People often ask "Why me?", I've thought it for a brief moment, but also thought "Why not me?" I'm no more special than anyone else who has meet with an unfortunate turn of events....

I often replay the words my neurologist said to me in my head "I hope we never have to talk about this again, I want to test you for Myasthenia Gravis!" He and I are still talking about it today. We talk about what muscles aren't working as well as they should, what my new normal has become, and what treatments we have exhausted, or will try in the future, all in the hope of returning some normalcy to this crazy, illness ridden body. 

There are days when I'm too weak to lift a coffee cup, hold my eyes open more than a slit, or have the strength in my hands to press a computer key...I must walk with a cane, use a walker or an electric wheelchair because I can no longer walk more than a short distance... I take medication and IV infusions that only improve my muscle use for a short period of time, and must rely on family and friends to help with some of the most basic things some take for granted. 

I do find some irony in the fact that I have acquired Myasthenia Gravis in the month of June! For those who haven't noticed:

JUNE IS MYASTHENIA GRAVIS AWARENESS MONTH! So please join me in spreading Myasthenia Gravis awareness as part of my Unhappy Anniversary celebration, I can't think of a better gift to receive... 

Can There Be Too Much Awareness?

You may be wondering why I ask...
June is Myasthenia Gravis Awareness Month
MG is a rare, incurable, autoimmune neuromuscular disease. 
It affects the voluntary muscles, it can cause weakness of your arms and legs, blurred or double vision, slurred speech, and impair the ability to chew, swallow, and breath.

If you are a person living with such a disease there can NEVER be too much awareness. You spend every minute of every day hoping someone will find a cure, or a better treatment. You hope and pray that when you post something on social media it gets shared, liked, retweeted, or commented on. You hope a celebrity will take up your cause and agree to be a spokesperson for your disease. You try to dream a challenge that will flood the internet with inspiration, awareness and donations for a cure.

ALL YOU REALLY WANT IS SOMEONE TO PAY ATTENTION TO YOUR DISEASE!

So PLEASE don't ignore that post, tweet or video, someone's life may depend on it...
Someday it might be YOUR life, or that of YOUR CHILD...

If you would like learn more visit
The Myasthenia Gravis Foundation of America
www.myasthenia.org

or follow #IhaveheardofMG & #stompoutMG on twitter.com

Liquid Lightening

Today a brief lesson about Intravenous Immunoglobulin Therapy or IVIG for short...

IVIG is a blood product created from the antibodies of approximately 10,000 healthy blood donors. Plasma is screened for diseases like Hepatitis, HIV, and many others. The effects of the treatment vary from person to person, and can last from a few weeks to a few months. IVIG is used to treat four major disease categories, they include primary immune deficiencies, acute infection, and autoimmune diseases such as Myasthenia Gravis.

Infusions are done in hospitals, infusion centers, or in the comfort of ones home. Where you are infused will depend on the type of medical insurance you have, and what they will or will not cover.

The amount of medication you receive is based on weight and medical condition. The time it takes to infuse is based on your doctors recommendations and your ability to tolerate the administration rate.  

I receive my infusions at home. My medication and supplies are prepared by a specialized pharmacy and delivered to my home prior to my scheduled infusions, they also arrange for the nurses who administer my treatment.

It's very important to be well hydrated, this helps to eliminate or reduce side effects. I start to increase my fluid intake the day before...On the day of infusion I pre-medicate myself with diphenhydramine and acetaminophen. They are used to prevent headaches and rashes, two of the biggest side effects. My nurse starts an IV line, then prepares the medication. A pump is used to deliver the IVIG at a controled rate. Your blood pressure, temperature, and heart rate are monitored frequently during the infusion. IVIG is started at a slow rate of infusion and increased to a comfortable level to reduce the chance of side effects. In my case the infusion lasts about 5 to 6 hours.

There are always complication and side effects to be aware of. They include blood clots, pulmonary edema, kidney disease, aseptic meningitis, and anaphylactic shock. Headache, fever, chills, dizziness, nausea, vomiting, rapid heart rate, and fatigue are the most common side effects. They can be reduced or eliminated by slowing down the infusion rate and increasing fluids.

For some the benefits of IVIG outweigh the risks associated with treatment. In my house we call IVIG "Liquid Lightening" because of the extra strength and energy I get from my treatments. It has helped with my limb weakness, blurred vision, and fatigue. I can rely on my family just a little less to help me do every day things. I enjoy being able to bake. cook, and indulge in my favorite hobbies, even if it's only for short periods. I still nap daily, use a cane for balance, or use a power chair if I need to go to more than one store during a shopping trip. But those are minor inconveniences. My life isn't what it was before Myasthenia Gravis, but I am not going to let it destroy my spirit...

To those who donate blood I want to say THANK YOU  your generosity is appreciated beyond measure, for that I am eternally grateful...

It's Been So Long

I must apologize for being away so long...
So much has gone on since my last post.

I was so inspired by other bloggers to share my story, but sadly MG has gotten in the way.

My medical issues have almost completely taken over my life. It was the last thing I had expected. The days are filled with doctors appointments, medical testing, and IVIG infusions. It's like a merry go round, the cycle repeats itself over and over again. I feel like I'm on a treadmill that never stops running...

New health issues have shown themselves...there are more battles ahead, more dragons to slay...
I hope to post several times a week, but will make no promises.

Tomorrow is infusion day, I'll take you along for the ride...see you then!

My Bedroom, My Retreat, My Prison

When you live with Myasthenia Gravis the weather can be your best friend or your worst enemy.

During the recent heatwave the monster reared it's ugly head with a vengeance. My MG affects my limb girdles the most. So I always have weak legs, arms, and shoulders. Some days it's harder to walk then others, it only gets worse as it gets hotter. There are days when a cane is enough support, other times a rollator, most recently I've "upgraded" to a power wheelchair. 

My sister and I needed to run a few errands, so with the heat we decided it was best to use my chair. We decided to go for breakfast, things went downhill from there. Just the few minutes in the heat on the way into the restaurant caused my ptosis to kick in. My arms became so weak I couldn't lift my coffee mug, I had barely enough strength in my hands to hold my fork!  What should have been a pleasant, enjoyable breakfast turned into a freak show. When you body starts to flop and droop and you can almost feed yourself people stare. I've become accustomed to the stares, but it's a feeling that never gets easier.

The AC in the van was my respite, I regained some strength on the way to our next destination. A quick stop at the grocery store proved uneventful. I rolled a few stores away and entered the cell phone store. It was as cold as a meat locker, I could have stayed there all day. Much to my disappointment it was time to return to the inferno outside.  I wheeled up the ramp into the van. I was only in the heat a few minutes, but I could feel the strength in my muscles slip away. My sister helped me get on my seat and get my legs into a good spot, I had turned into a useless rag doll that could hardly keep itself upright...Thank GOD for seat belts!

By this time rest and cool air was what I needed most. I thought my recliner would do the trick, but NOOOOOOO, not today. So into bed I went. I found sanctuary in the comfort of pillows that could be placed just so, providing support for limbs to weak to support themselves. A cool drink in a light weight tumbler with a lid, placed within easy reach. 

My "RETREAT" is full of all the comforts a person with a chronic illness might find useful. Books to read, if you have the strength to hold them, or your ptosis or blurred vision prevents you from seeing clearly. TV, movies or videos are an option, but that too becomes a problem when your vision is impaired. So music has become my "go to" when I am forced to spend time in my "RETREAT". I listen to Pandora, or my playlists on my MP3 player. When you are forced to spend time in bed you want to have all the creature comforts around you.  Unfortunately what was once a "RETREAT" becomes a "PRISON". It takes time for extremely weak muscles to gain strength. You get tired of bed, tired of the walls around you, tired of the ceiling above your head. All you want is the "MG WARDEN" to release you on bail or grant you parole!  But all to often we must serve out our full sentence in our own personal "PRISON" just waiting for the "MG WARDEN" unlock the cell...

So to all my fellow "MG PRISONERS" ...stay cool, rest as much as possible, and ALWAYS FACE MONSTER HEAD ON, and keep a "GET OUT OF JAIL FREE" card handy!

A Day of Rest...NOT!

For many people Sunday is a day of rest. Some choose to relax in pajama's while reading the paper and doing the NY Times crossword puzzle. Others spend time shopping, racing at a frantic pace from store to store to get the best bargains. While others spend time at a house of worship before enjoying a quiet day with family and friends.

For me it's sort of a mish-mosh of things. I start my Sunday like most days.  I wake to an alarm that is set about a half hour before I need to get out of bed. This allows me time to take medication that gives me strength in my muscles to go about my day. Then and only then can I proceed as others do! If I don't allow myself this time, I have to rely on the help of others before my day really gets started. It's difficult to go from being a caregiver in your professional life, to the person needing assistance and care in your personal life.

I use Sunday to decide what I might want to make for dinner for the week, catch up on laundry, do some light housekeeping, and care for my niece who is also disabled, while my sister is at work. This doesn't always work out. Like many with a chronic illness some days are better than others. Even the best plans must be rearranged to allow for sudden muscle weakness or fatigue when Myasthenia Gravis decides IT is in charge of your body.  The old saying about The Best Laid Plans of Mice and Men is an everyday reality for many of us.

This weeks menu will include Unstuffed Cabbage, Chicken Fried Rice, Vegetable Soup, and some other undecided selections. I've chopped and peeled to my hearts content. All that remains is to stir fry the Chicken Fried Rice.  The aromas that have filled my house today are mouth watering to say the least...

I think a nap is in order, and perhaps I will "tackle"some treats for "The Big Game" or it will be Tea & Scones to enjoy while watching "Downton Abbey"...better not plan too far ahead!

Enjoy your day, no matter what you have planned...Remember even a bad day can be looked upon as a blessing...you never know what tomorrow will bring so make every moment count...

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.

My First Meeting and a Bit About Coraggio!

This past weekend I had the opportunity to attend my first Myasthenia Gravis chapter meeting.  The NJ chapter holds about four to six meetings a year.  They meet about an hour from my house, and since I can't drive as far as I used to without my arms and neck tiring, my sister acted as driver.  We made a few references to "Driving Miss Daisy" and off we went!

I was very excited to finally meet other people who live with MG. MGer's  as my friend Kerri calls us.  I still don't know what most people prefer, I guess I'll learn as I go to more meetings!  The people were warm, friendly, and gracious.  Many shared their stories, they talked of daily struggles and ways to overcome obstacles they faced.  The chapter has a lending library, you take a book home and mail it back to the librarian when you're finished.  

A guest speaker was also on the agenda.  Her name was Lisa K. Gigliotti, J.D., an administrative law judge, a policy adviser for the Michigan State Senate and Governor, as well as an advocate for people with disabilities.  Ms. Gigliotti is also an author and motivational speaker. She too lives with Myasthenia Gravis and Rheumatoid Arthritis.

Her presentation was called "Coraggio, Lessons for Living From an Italian Grandmother". Lisa talks about how she overcame the disabling effects of Rheumatoid Arthritis and later Myasthenia Gravis. She shares stories about her family, and how she drew strength and coraggio (courage) from her grandmother after the death of her mother and aunt.  

I hope you get the chance to hear Lisa or read one of her books.

To visit Lisa's blog, or watch her video visit:

 withcourageican.com

Lisa, Thank you for showing us how to live with "CORAGGIO!"

The Yes We Can Van

I had the pleasure of meeting one of my newer Facebook friends yesterday.  Her name is Carole Brown, she's originally from the UK, buts now calls the USA home.

Carole is currently traveling across the United States in her "Yes We Can Van". It's a vintage 1970's VW camper van.  

 

The main purpose to raise awareness  about Myasthenia Gravis (MG). MG is a rare under diagnosed auto-immune neuro-muscular disease that causes severe muscle weakness, currently there is no cure.  Anyone can be affected by MG, it knows no age, race, or ethnicity. 

Carole's mom lived with MG, it has become her life's mission to tell others what MG is and how it affects people's lives. She is currently traveling along the southern states en route to California.  She plans to visit MG chapter meetings and visit with others whose lives have been affected by MG. 

If you would like to follow Carole and her "Yes We Can" camper van or learn more about Myasthenia Gravis simply 

 click on this link.

  Wishing you safe travels my friend!

 

My Little Baker...

Baking is one of my favorite things to do, especially when the weather starts to get cooler.  There's nothing like the sweet smell of something yummy baking.  It makes me feel all warm and happy inside. 

My youngest niece Haley also loves to bake.  Although sometimes our ideas of "baking"  aren't on the same page.  We love baking from scratch, she on the other hand thinks placing a Pillsbury break and bake cookie on a tray is "baking".  So this weekend we compromised, we baked from a cake mix.  We always keep a few mixes and frosting on hand to use in a pinch.

My little baker had decided she was going to bake cupcakes.  There were all kinds of noises coming from the kitchen. I could hear doors and drawers being opened and closed, and the sound of metal as it crashed on the kitchen floor!  I shook my head as I rose from my chair.  I bravely walked to the kitchen, as I approached Haley looked at me and announced "we don't have any cupcake mix, I'll have to make brownies instead!"  I explained that you use a cake mix to bake cupcakes, we didn't need a special mix.  The look of happiness returned!  On the kitchen table she had already gathered all of the things we would need.  There were eggs, oil, a mixing bowl and whisk, and all sorts of measuring cups just waiting to be used.  

Haley informed me she didn't really need me to help, I could sit and watch...with great trepidation I took a seat at the kitchen table.  With the skills of a master baker she carefully measured.  She mixed and mixed until the batter looked just right.  I poured the batter into a large measuring cup to make putting the batter into the cupcake pan easier.  Chef Haley slowly poured the batter into each cup, licking her fingers every chance she could.  With her approval I placed them in the oven. She set the timer and waited as patiently as an eight year old could. Their sweet aroma began to fill the kitchen. It would only be a matter of time before they would be ready.

We placed the cupcakes on the rack, while they cooled Chef Haley gathered some frosting and sprinkles to decorate with.  Each cupcake was carefully frosted and covered in Halloween sprinkles.  Cleanup came next!  After licking bowls and whisks Haley even did her own dishes...She was so proud of all her work, and so was I!!

YUMMY GOODNESS!

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 

 

 

Anxiously Awaiting Autumn

Autumn is my favorite time of year...I love the crisp chill in the evening air...the magnificent colors as the leaves change from brilliant green to warm browns, gold, oranges, & reds.

The animals are busy preparing themselves for the winter ahead...the geese fly overhead on their way to their winter homes...squirrels are scampering about hiding nuts...

Farm markets will soon open their corn mazes and have all kinds of family activities...Apples are ripe for the picking.

My cooking and baking will change from quick and easy to slow and comforting...Soups, stews, casseroles...Pumpkin Muffins...Apple Pie...Cranberry Nut Bread.

But what I love most of all are the changes my body  experiences...The MG monster LOVES the heat and humidity that summer brings...for me it also LOVES "old man winter"...The MG monster is also a COWARD...he hides in the fall...My muscle's grow stronger as the days grow shorter...my steps become more sure...I can walk greater distances...I'm more productive at home...my body doesn't require hours of sleep after doing even the simplest tasks...

  That's why autumn is my favorite season!!!

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