The New Year Approaches

As the New Year approaches I sit back and reflect upon 2008 and all it has taught me. I am amazed in just a year all that I have learned and how differently I view my life. I have never been one to take life for granted; especially since Alfred's accident nearly 11 years ago!

I feel very fortunate for the life I have and all that the Lord has given us. This past year I have enjoyed some momentous events and faced a lot of challenges and changes. Yes for sure 2008 will be quite the year to remember! It was the year that I turned the big 50 in May; celebrated in our backyard with family and friends only to be highlighted with the release of 12 of the most breathtaking, beautiful Monarch Butterflies I had ever seen!

August was greeted with excitement as Alfred and I celebrated our 30th wedding anniversary at our favorite Italian restaurant! and then a week later my diagnosis once again was changed as you all know from being Parkinson's Disease to a Parkinson's Plus issue known as Multiple Systems Atrophy. The shock is still taking its toll on my emotions at times, but thank God for my faith and my stubbornness that continues to keep me on my toes!

In September I stopped working, due to being too tired along with other physical issues and also having to admit that the failing economy helped push the decision to stop working now. I have discovered that I have so much more energy to face each day than what I had when I was working. Our youngest daughter and I daily would chit chat on our cell phones while we both were en-route to our jobs; I was the one always complaining about being exhausted and ill feeling. This is no longer an issue since I am able wake-up when my body is ready instead of having an alarm at 5:00 a.m. go off and force myself to hurry and get ready; yes now I am able to pace myself slowly without the pressure of getting out the door at a certain time.

Not to forget the unexpected visits from Pokie in October and Marla in November, two very special friends that have been one of the biggest influences in my life that I had met online at the website called Patients Like Me over a year ago! November also included the birth of our grand baby number four grandson Aydin Matthew ; oh the miracle of new life and all it goes through to take its first breath! Yes indeed it has been quite a year!

I write this tonight with a very worried heart. I have a friend named Nicole who has Shy-Drager Syndrome it is another Parkinson Plus Syndrome. She is ten years younger than me...she is indeed very young and tonight she is in the hospital waiting for a pacemaker to be installed into her chest tomorrow morning. The pacemaker is necessary as the disease is now effecting her heartbeat; it has stopped numerous times throughout the Christmas Holiday. Yes while we were with family on Christmas Nicole and her hubby were in the ER; educating them on her disease and how to treat it.

This is one thing I find very frightening, not to put down all medical professionals; however, so many of them are not educated on how to treat these rare disorders. Yes, I know that's why they are rare, but still, when you have to go to an emergency room you really have to be responsible to know what medications you can't have with the meds you currently are taking or the wrong med could kill you! As patients we really have to be our own advacates in so many ways. I have found myself explaining to doctors what MSA is...yes they just don't know or understand it! Last month I was in urgent care and for the first time I felt as if I had the plague. The doctor came in, kept her distance from me and let me know as she had my file in her hand that she had no idea what MSA was or what medications I was looking for! Shoot all I wanted was help with my digestive system that was not working! Scary! Very Scary! I ended up in the ER because the Urgent Care doctor did not have the insight to properly guide me or help me out with what I was experiencing or properly how to treat it!

Yes I have seen where my own personal doctors this year have been frustrated with my care and unable to answer questions I have asked. It has been a year where I have really learned on my own that it is up to me to be responsible for me...in other words gang you have to go the extra mile, it's sad, but necessary to do your homework on your health needs. I am not advocating you don't accept or listen to your doctor, not at all...what I am saying is sometimes you have to listen to your gut...follow your instincts and go with it. You have to take the time to educate yourself about your body and what is going on with it, then as a "team" you and your doctor can work effectively together.

I really feel we need to start educating some of our doctors on bedside manners again. They are so over booked, overworked that they are forgetting we are real people with real feelings and needs. I agree we also have a responsibility in all of this too and that is what this rambling is leading up to. If we don't start to help our doctors understand where some of them are failing us, then we not only lose, but so does the next guy in line after us. I have said it all along doctors work for us...you have the right to hire and fire!

The reason for me jumping into this from reminiscing about 2008 is because for me 2009 is going to be a year of moving forward... I plan to really tackle MSA and all it entails head on! Be on the lookout for ASK ME ABOUT MSA AND PD PLUS SYNDROMES the buttons are in the works along with t-shirts!!! ALL of it will be for research and spreading the word! Awareness, about a disease few have ever heard of...lives effected, families changed forever!!

Yes my friends the New Year Approaches and there will be NO STOPPING this butterfly from moving forward and grasping the unknown ahead with excitement...I dare you ....join me...

ASK ME ABOUT MSA!!!!

Merry Christmas

As we all are bustling around getting things ready for tonight and tomorrow I just want to take a quick moment to wish all of you a Very Merry Christmas and a Safe New Year.

I am anxious for 2008 to close out and for 2009 well I look at it with great expectation....I feel it will be a year of growth for many of us!

God Bless you all...

What My Focus Is On

Well are you getting all your shopping completed? Are you feeling a bit stressed? I hope not!

This is the time of year when homes are lit up so pretty and the Christmas Trees are just beautiful... I found this site and thought I would share it with you all...just click on this.. Christmas Tree Trivia there is all kinds of neat trivia about Christmas trees.

I am getting more and more excited as the weekend gets closer, this is when I will start my baking for family, friends, neighbors and for Christmas Eve. I went grocery shopping yesterday and picked up all the goodies necessary and icing for the grand kids to use on the sugar cookies! Oh what fun...These are the things I am choosing to focus on instead of what ails me!

It's easy to get caught up in the changes I have seen in my body in the past year, and the fact that I am no longer working, but instead I am learning to channel my energy to more positive areas, this has taken some practice, but in the long run I know I am not going to be the only one that benefits, but those around me certainly will too; they won't have to listen to me complain!

I am starting to settle into some new routines since I am not working. I really think I went through quite a period of rebellion! I have started getting up earlier and walking the dogs in the morning with my hubby, this is nice even though the recent mid 30 degree temperature is hard to embrace...I so look forward to getting back into the house and grabbing that first cup of coffee!! I have to be honest and admit this change would not have come about had my digestive system not started giving me issues and slowing up. It has been quite a wake-up call for me. I can no longer be lazy about doing the things I should have been doing long ago...including drinking more water...YUCK I HATE WATER!!!

It is neat to see my hubby Al's routine when we walk the dogs; I have to take a second and brag about him...this guy walks the dogs no matter what the weather or how he feels, (it's very rare he does not make his daily walk) and porches the neighbors newspapers! What a guy! If he didn't then they would have to walk to the curb to retrieve their papers and most of them don't know he does this! It is his little "thing" he loves to do, it is funny though, the few that do know he porches their papers will call to see if he is OK if their paper is not porched. To him it is no big deal he just does it, me I am so proud of him! What a guy! OK bragging done...

My wish for you all today is that you are smiling more and feeling the love and peace of our Lord and Savior at this magical time of year!!! If you are able to get outside bundle up warm and get some fresh air even though it is so cold ...it really is something else...to feel the cold against your face, and listen as the world starts to wake up or see the sun come up! I remember when I was a kid I thought it was so cool to go outside and watch my warm breath come out and make the puff of a cloud....Oh and ice skating...how I loved to ice skate, and sledding to...yep I had a Swiss made sled with metal runners on it and wooden slats and a string to pull it by...the only problem was going down a hill it had no steering mechanism, I remember the laughter and screaming as I took my push from the hilltop. Wow what wonderful memories and what a wonderful time of year!

Hugs Btrflynana

The Spirit of Christmas

I just love this time of year. I love to decorate the house, I love to sit and watch my tree as it plays holiday carols, I love fooling around with my nativity set and I love the way people in general just seem happier and kinder to one another, and I love being with my grand kids and family!

I love to decorate the house every room has something in it, including the bathrooms...yes I have always loved this time of year even when I was a small child. I have such fond memories of my mother and grandmother preparing for the family gathering and all the wonderful foods that would be put out. I have been sure to carry on this tradition for our daughters and now for their families.

Preparation for the big day will begin towards the end of this week. I will start doing baking...I love to bake I was a baker for a local grocery chain when the girls were little. Come Christmas Eve we will put out an enormous display of Hors d'Ouveres which, will include meatballs in a bourbon sauce, mini pigs in a blanket, shrimp platter, sun dried tomato and sausage quiche, ham, rolls, pasta salad, stuffed eggs, stuffed mushrooms, lumpia and an array of dips, crackers, chips and salsa these are just a few of the goodies that will go out this year...and then oh then there is the desert table!!! Cookies, Al's home made fudge, wine cakes, gooey butter cakes, mini lemon meringue and cherry pies and many more....We will have eggnog with vanilla ice cream in it and soda's and wine too! The music will be cranked up and the laughter will be in abundance! And the best part will be to watch the children in their excitement and anticipation of Santa's arrival!!

I might be 50 but I am also still a kid at heart and I soo love this time of year! I often feel that it is a shame that the "spirit" of Christmas we enjoy does not seem stay around throughout the year. We have so many pressures and struggles we face everyday. The economy right now is making this time of year even more stressful for many families.; there are many parents or children still oversees and away from their loved ones. not to mention all the folks that are now currently out of work or facing unemployment very soon. Yes no doubt about it these are difficult, trying times for all of us in one way or another.

I recently read in our local paper where the local food bank is nearly empty with donations. Our local market put up a tree this year for the elderly with their names and age on them so that you can purchase something for one of them...This is the time of year in spite of all that we are personally going through that it also helps to embrace someone else who is having a tough time; it might be in donating time at a local retirement home, or visiting the sick in the hospital or giving an extra turkey to the local food bank or a toy for a child. It might be something as simple as a plate of cookies for the neighbor you never chat with, or a family you know of that is struggling, just letting them know they matter. Have you ever played Secret Santa??? It's where you put together a basket of goodies and leave them on the porch anonymously...

As we all start bustling around during the next week and half maybe we could think of one way to brighten the day for another...your kindness just might be the very thing that could change an angered heart to a loving one...You never know what lasting effect a kind deed has on someone or even on yourself!

Joys be being a Nana

Well the tree is up and decorated and a few presents have been wrapped and placed under it. This year so many people are suffering around the United States with the economy being in the shambles that it is. Families are finding it harder and harder to make the ends meet. I know we ourselves are feeling the pinch with my not working; however, it had not stopped the "spirit" of the season from rising to great heights today in our home.

When we were young raising our family, working and maintaining a household sometimes the importance of the moment got lost. I can remember often coming home from work rushing to get dinner on the table, getting a load of clothes going and then trying to grab a moment for myself with the girls under foot patiently trying to share their days events with hubby and I. The older I get the more aware I am of just how important everyday is...Especially those very moments in the past that are just that a memory now. Yes time is precious; especially when one is concerned the clock is ticking faster and faster. I am so grateful for our grandchildren, I am at a point in life where I really am able to fully enjoy the concept of grand-parenting.

Our granddaughter Kylee is so excited about Christmas when she comes through the front door she is just beaming from ear to ear. Our tree is decorated and she is a typical inquisitive four year old; touching ornaments, playing music boxes and asking question after question. I had a few hours together today alone while our daughter and my husband went to retrieve some very important Christmas Eve Santa items. Kylee helped me with baking some cookies and while we baked we sang Christmas songs. It was great, it did not matter to Kylee if I sung off key, she was right there with me, laughing and dancing...just the two of us (Aydin her new baby brother one month old now was fast a sleep and oblivious to all that was going on!) we snacked on hot cookies right out of oven and glasses of milk...it was a wonderful time. She sat at our kitchen counter with her rather large Santa hat on her head beaming from ear to ear.

We had a heart to heart talk about why we celebrate Christmas and the preparation for the big birthday party of our Lord on Christmas Eve and Christmas Day... yes I had a grand day today, at 50 I felt alive and full of life and so young...Thank you Lord for the gift of children....I hope parents are able find time out of their busy hectic stressful lives to embrace the wonderful human beings they have nurtured into this world...I pray that they can embrace and love these tiny creatures who are so trusting and loving.

Tonight I am grateful for being a Nana....I so love this role in my life!!! To Kane, Austin, Kylee and Aydin...I love all four of you...Thank you for making me a Nana...one of the most important positions I will hold in this lifetime...I do it with honor and love!!!