Monday, April 25, 2011

Little Things Make Me Happy...

Nowadays even the little things bring me happiness;

As I lay in bed waiting for my morning meds to kick in I feel the warmth of the sun on my face, the smell of the spring blooms floating in the air, the coo of the doves that have nested beneath my window. I say my morning prayers, then I'm brought back to reality as my niece jumps on my bed yelling "rise and shine sleepy head" I gently remind her "Aunt Rachel needs a few more minutes, her medicine hasn't started to work yet." She says "I'll help you up" as she pulls on my arm with all her might. Of course I can't budge, but she persists.

I can't spring out of bed, jump in the shower, put on clothes and run out the door like I did in the past. Everything is planned to the best of my ability. Do I need to rest between tasks, am I strong enough to climb the steps today, can I put my earrings in without help today.  That's just part of life with MG, it's my life now so I have to make the best of it.

Today is laundry day! I enjoy doing laundry (call me crazy). I love the smell of freshl washed linens, and the feel of warm clothes as I pull them from the dryer.  But as with most everything in my life, even doing laundry is a chore (pun intended!).  My MG affects my limb girdles, this makes it difficult for me to climb stairs and lift my arms, especially if I'm carrying something.  

Last week my sister and I were at the store and I bought a new laundry basket. Well things being what they are, for some this might not be such a big deal.  Not so for me, this laundry basket has helped me regain some independence!!!  Our washer and dryer are in the basement. I have 10 steps to tackle with each and every load I do, it's  like climbing a mountain. It's the perfect size to hold a single load of clothes. Yet sturdy enough for me to drag it down the steps, and use it to lean on to push myself back up the steps again. So on a good day I don't need to ask someone to bring the basket up or down the steps for me.  This makes me so very happy!!

So Thank You Sterlite for creating such a great laundry basket!!
**Now if you could invent something to Fold it too**

Thursday, April 21, 2011

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.

Sunday, April 17, 2011

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....

Saturday, April 9, 2011

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!

Thursday, April 7, 2011

The Gift of Crochet

One of my favorite things to do in my spare time is crochet.  My mother started to teach me when I was in kindergarten. She was great at nurturing my creative side. My earliest lessons began with the chain stitch. Like other young crocheters, I soon became the proud owner of a grocery bag full of crocheted chains. They were all different sizes and colors. I used them for many things, we stitched them together to make headbands, bracelets, and a host of other things.

Many of my completed projects were given as gifts to family and friends. There have been afghans, baby sets, hats scarves, the list goes on and on.
I must admit, the thing I find most fulfilling about crochet is sharing the projects with others. 
These are some of the Amigurumi's that I make for Ronald McDonald House in Wilmington, Delaware. My sister and niece stay there quite often. The kids love these crazy things, I can't make enough of them...
Several of my afghans have been used as raffle and door prizes. These have been donated to my nieces school for their annual dinner dance. All of the money raised goes to the student activity fund. 
While others are a source of encouragement, shared with friends who struggle daily with chronic illness..
My love of crochet never waivers, it doesn't come as easily anymore. My neck, hands, and arms, weaken. I don't crochet as quickly as I once did. But the fact that I can still crochet is a great comfort. I'm very thankful for still being able to share what I love with others.

Monday, April 4, 2011

Defeat or Acceptance

I haven't really blogged all that much, let alone anything about my recent health struggles.  I've always been a private person to some degree.  But after following other blogs I think it might not bother to share a few personal things.

Not many people know I was recently diagnosed with Myasthenia Gravis, a neuromuscular auto-immune disease. The name means grave muscle weakness.  It effects everyone a little differently, it can be managed with a few different medications, but there is no cure.  There are days when I feel like I have nothing wrong with me at all, other days I can barely walk, pour myself a cup of coffee, or brush my teeth without holding my tooth brush with both hands!

I began following the blogs of other people living with MG, they have become a source of strength, support, and encouragement.  I'm happy to call them friends!!  Following their posts has made feel okay to start to share things about myself, and this crazy disease.  So thank you to Kerri, Shari, Rach, and so many others I follow!

Okay here goes.....
Defeat or acceptance, sometimes things seem to go along almost like before.  But as of late I've had to make other adjustments that have left me a bit shaken.  Not long ago if I walked to long or to much I simply needed some extra rest to recharge, now that's not enough.  There were days where walking and balance started to become a problem, so I would always grab for a shopping cart, or someones arm for support if a cart wasn't available.  So eventually I admitted DEFEAT, and began taking a cane with me for support.  I've learned to ACCEPT the fact that I needed a little extra help. So I answered curious peoples questions, and didn't let it bother me much.  Now there are days when the cane isn't enough.  So finally I've sucked up my pride and admitted DEFEAT once more, I started using those electric scooters at the stores. What must others think?  Is she fat and lazy...she looks OK to me...maybe an old person needed that scooter!! So now I'm learning to ACCEPT the stares of others. I made some jokes about the scooter with my sister, and put on a big smile and cruised through the stores. But inside I was shaken, was I DEFEATED, or had I ACCEPTED the fact that this is my new life? I came to realize that I must ACCEPT limitations every day, but I will not let MG DEFEAT me!!!!