WHO AM I


Who Am I is the name of my blog here at WordPress. I used to always think I knew who I was but beginning in July, 2017, life started to change and I got caught up in a whirl wind of emotions.

It began with my father having two cancers at once. Leukemia and Multiply Myeloma.

A.https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

 

I took care of him for the  year that he went through this before it took his life. I learned not to be embarrassed by bathing him and taking over his daily chores. I was his daughter and thought I could never look at my dad in anything other than being fully dressed but the nursing person in me took over and I did it.

 

Next, I got a divorce. I had always been married since the winter following graduation. Suddenly I was alone and wondered if I would make it. Then came my brother’s heart attack and his ugly disease, Multiple System Atrophy.

A. Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

 

Today, I have some of my father and brother’s illness. I have the Parkinson’s and Ataxia. I wondered daily not knowing where I was going and who I really was. It is just recently that I seem to be settling down inside.

 

I pray a lot. I go to church more often and I believe God is showing me things I never actually realized about myself.

 

I have stepped out and tried painting. I made Christmas wreaths this year. I have been asked to provide our Saturday night supper this coming Saturday with selections of Christmas music by playing the piano. Before I had the time to think before answering; I answered yes, I will. God must have had a hand in that answer and I will lean on him that I can pull this off.

 

I volunteer now at a local agency. I help many people and this is good for me since I tend to have my own little pity  parties on why I can’t stand well and do the things I used to do. There are millions of people worse off than me, and my job shows me this each day I work.

 

I don’t know who I am but I do know God still has work for me to do and I have a purpose here on earth. I look forward to each day, asking him to help me shine to others, to help those in need, and to thank God for all I can still do.

Merry Christmas my friends.

 

wreath

Seeing What We Don’t Notice


Maybe I shouldn’t admit it; but I am a little afraid when I go out in public to places I am unfamiliar with. When I moved to Florida years ago; I moved to a city by far larger than where my home town is that I reside in.

 

Everywhere I went; I saw a variety of people that I was not used to seeing. I saw many cultures. I saw homeless people. I saw purple hair and long hair, different clothing styles. Maybe I should change the word afraid to not knowing how to react, or is that a stupid phrase also.

 

My brother and I learned that we should not go outside in the dark of where we lived because there were rat snakes roaming about. I am sure that they have their purpose in this world; but considering the great inner fear of snakes, I didn’t care if they were rat snakes or garden snakes; they were snakes and I obeyed.

 

We really get used to ” our area”. When we live, work and play in the same surroundings, we get comfortable. When you venture into a new area and don’t have that comfortable feeling and we see new things and people; we don’t know what to think or how to respond.

 

I think this is me so I will erase the word afraid and not knowing how to react to; I need to broaden my horizon in culture. I  have been way too sheltered in my own little corner of the world.

 

God placed a lot of countries, cities and towns on our planet. Along with this comes culture, different foods, interests and lots of learning for us. I remember one day while living in Florida, my brother and I went to a gas station to put fuel in the car.

 

I didn’t get out of the car immediately because sitting beside the pump was a big trash barrel and going through the barrel was a homeless man. I glanced at my brother and he was staring at the man. I stared along  with him. I had never really witnessed a homeless person before; only read about them in the news.

 

As I watched him, I started to take his place in my mind, and my feelings of wonder turned to pity for him and then I found myself asking what could I do to help. Suddenly I was anxious to get out of the car and pump my gas. Afterwards, I handed the man a twenty dollar bill and told him to have a good day. He smiled big and shook my hand until I thought my arm was going to fall off.

 

I had a swelling in my heart. I had helped someone else instead of thinking of my  usual thoughts. It felt good. It even seemed that my brother and I had a better day than ever. Our spirits were lifted. I had torn down the uncomfortable wall and opened myself to something I had not dealt with before.

 

I have since then studied culture much more. Learning of rituals and habitats of others is very fascinating. Beliefs others carry is a great learning experience. God  sure did an awesome job at placing so many different people under one big, blue marble.

 

I look at life different today just from that one day years ago with my brother. Now with my illness, I am stuck in my comfortable surroundings; but I seek out what others are doing, how they think, are they hungry or cold; when I am able to get out from under my own roof.

 

Right here in my home town there are people in need. People who are hungry or cold, who need us. They may need a dollar or two or a meal from McDonalds and I am sure they need a prayer said for them as much as we need prayers said for ourselves.

 

So in conclusion; we need to step out of our comfort zone. We need to quit thinking of ourselves. We need to look for others who may look different or eat different but realize they need the same things as we do. To be cared about, to be loved, to be noticed.

 

I will never forget that teaching lesson from so long ago, sitting at the gas station, waiting to pump my gas and the man I helped. How it made me realize how lucky I am in life, how blessed and how much better I felt; helping someone.

 

Writing this has immediately taken me to the thought of beauty. I think I am going to use my camera to not only take beautiful nature, but to capture, or try to, the beauty inside each heart I pass.

 

The photo below is at my class reunion. I am the one on the bottom second from the right

reunion 90

Parkinsonism/Ataxia/Dystonia


I had to write to you this morning because I read a post that reminded me so much of who I used to be. My heart ached as I understood her fear of what tomorrow holds. I do have an illness, this is true.

 

It is hard to walk, it has affected my legs and feet. I could not even devour the idea of walking in a relay unless it was hands on a walker and at a snail’s pace. I choke on some foods. I have trouble bathing. I have to take much longer to clean my house and baking or fixing a medium size meal would be very difficult.

 

When I received my news on how much my monthly disability check would be and I saw the report that the additional help of food stamps would only amount to fifteen dollars a month; I panicked. How can anyone live on fifteen dollars a week in food when I actually can see the price changes at the grocery stores rise sometimes in one week.

 

Without being able to earn a paycheck, how was I going to go shopping or keep the upkeep on car repairs or so many things I used to have to do. This illness has taken so much from my normal living and yet this illness has blessed me with new eyes.

 

I never noticed how beautiful the sun rising and lowering was. I never had the time to look. I never saw how close God was, standing right beside me, providing me with food that I need, introducing me to my camera, giving me the intelligence and knowledge to set up pages for patients and caregivers to come to for help.

 

I would barely notice that my needs were actually not being met by me; but by God. Now, I thank God for where I am at today. I thank him for my place to live, my friends, waking up each morning.

 

A new light has better shining ability to see things more clearly and this was instilled in my heart and soul. No illness is fun. I have never heard anyone say, I am so thankful I have cancer.

 

Everything that happens to us in our lives was planned out for us before we were born by our holy God. He will carry me through this. I will have bad days and good days. I will die one day and I shall see Jesus and I will be living in the most grand of all places; like no place on this earth.

 

Thank-you Jesus, for placing me right where you need me to be. Please continue to show me how to be of help to others. Please give me strength to realize you are holding me on the bad days. Thank-you for your love that never ends. Amen

Truth


I was tagged for this reading on my Facebook. i found it interesting and truth.

 

Aaron Avner

There was a farmer who grew excellent quality corn. Every year he won the award for the best grown corn. One year a newspaper reporter interviewed him and learned something interesting about how he grew it. The reporter discovered that the farmer shared his seed corn with his neighbors. “How can you afford to share your best seed corn with your neighbors when they are entering corn in competition with yours each year?” the reporter asked.

“Why sir,” said the farmer, “Didn’t you know? The wind picks up pollen from the ripening corn and swirls it from field to field. If my neighbors grow inferior corn, cross-pollination will steadily degrade the quality of my corn. If I am to grow good corn, I must help my neighbors grow good corn.”

So is with our lives… Those who want to live meaningfully and well must help enrich the lives of others, for the value of a life is measured by the lives it touches. And those who choose to be happy must help others find happiness, for the welfare of each is bound up with the welfare of all…
-Call it power of collectivity…
-Call it a principle of success…
-Call it a law of life.
The fact is, none of us truly wins, until we all win!!

 

Photo taken by me.

 

indiananature2

One Nation Under God


I decided to reach out and risk slams. I have thought about it off and on and when articles pop back up; it reminds me to speak my mind with grace.

I ran across this article this morning on my Facebook.

http://www.wpta21.com/story/38687118/nfl-nflpa-freeze-anthem-rules-amid-backlash-to-miami-policy

 

The immediate question that arises in me is; why. Why is there a freeze? Why is there doubt? Why is there a why.

This is God’s earth,  his blue marble, his creation, his thought, his plan. We are guests. We are placed here to learn, love one another, help each other and pray for each other. We are here to help bring the non-believers to God; no matter what anyone else chooses to believe; this is my stand and belief. We are here to not be afraid to say thank-you.

We are not here to humiliate others by treating them different because they are not like us, or have the same money as us, or homes and cars. We are not here to take advantage of others by being shady or untruthful, or to make money from those that do not understand.

We are not here to make disrespectful comments to our President, our government. We are not here to force others to be on our side. We are not here to burn flags, beat and kill for pure pleasure or differences of opinions.

We are not here to judge. We have no right. We are not God. God placed those with a different color, a different language, a different culture for a reason.

If you are protesting placing your hand over your heart and saying the Pledge of Allegiance, than why are you here?

 

 

I Pledge allegiance, to the flag, of the Untied States of America.
And to the republic, for wich it stands, one nation under God.
Indivisible, with liberty and justice for all.
I pledge allegiance to the flag, of the United States of America.
And to the republic, for wich it stands, one nation under God.
Indivisible, with liberty and justice for all.
Speak:
The pledge of allegiancs to the flag, as a pledge to the ideals fo our
Forefathers.
The men who fought and died, for the building of the great nation.
It’s a pledge to fullfill our duties and obligations as citizons of the Untied States.
And to uphold the principals of our constitution.
And last but not least, it’s a pledge to maintain the four great feedoms
Cherished by all Americans, freedom of speech, freedom of religion,
Freedom for want, and freedom from fear.
I pledge allegiance, to the flag of the United States of America.
And to the religion, for wich it stands, one nation under God.
Indivisible, with liberty and justice for all.

Read more: Lee Greenwood – The Pledge Of Allegiance Lyrics | MetroLyrics

flags

We are to stand together, help each other, look down on no one, love each other as we do ourselves.

There is so much rivalry on our land. There is sadness, depression, anger, hatred. The competition to be better and above others is at an all-time high.

I am proud to be an American. I remember saying the Pledge of Allegiance when I was a child in school. I remember being allowed to say God in schools. Church was a place to go and be proud of.

kidss

I am a better person for being taught to do what is right. I am proud of who I am and where I live.

Don’t you think we need to revert back to where we remember why we are here? Shouldn’t we return to helping our  neighbor? Shouldn’t we go back and remember, God made the land we walk on and we are lucky enough to be able to share a piece of God’s work?

Today is a new day


I often ponder on why mornings are a much better time of day for me.  Nights have always seemed the worst for the many patients I used to care for. With evenings, it carries, coughs, fevers, depression, and death.

 

Each morning; I am renewed. I have no headaches usually. I awake with new hope and thank God for another chance to be helpful to others. I am not tired. I notice the sky and watch the sunrise. I think the clearest.

 

This reminds me of so many times in the Bible where it states the word New. A new beginning, a new life, a rebirth.

 

It seems it is all the negative and the stress of the day that helps bind nothings into pain and fatigue. If only we could protect ourselves in a bubble and not be touched by anything other than beautiful.

 

I go through my Facebook and see many friends that are suffering and I pray for healing. I see my friends who have had little sleep due to the mind wandering. Those who are caring for their loved ones are fatigued, so I pray for strength for them for this new day.

 

I look at one of my group pages that I love, Indiana Nature, and I smile. I love looking at all the photos that people take. I may not get to visit many places in Indiana but I sure do get beautiful visions of what other cities are like.

 

I try very hard to stay away from negativity. My heart hurts when I think of family members or people that were once in my life and how various situations have caused tears and pain. I miss what used to be. I sometimes begin to think about reaching out and re-connecting but decide not to as I know I have done this before and it has failed.

 

There is so much beauty in our world that each of us doesn’t really have the extra space to squeeze in the bad.  Look at the children laughing and playing. Watching people walk hand in hand. Seeing a father bending down to wipe the tears from his child’s cheeks after a fall from the bicycle.

 

I fell in love with God when my brother was ill. He then filled me with trust, hope and a realization that although I may not be able to work, although I may not be able to physically care for others; I can bring them hope and help them realize they are not alone.

 

This makes me feel better. I love my camera too. When I read your words that you like a photo I took; it makes me thank God for giving me the idea to use a camera. I will never be close to being a professional; but if you get a smile from a picture I take, then I am smiling too.

 

Life; it is an amazing piece of art isn’t it? Full of wonder, fascination. Thank goodness we have the choice of what to do with it.

 

It is already hot and muggy here this morning. I don’t know for sure what I am going to do. I know there is no  headache, no fatigue and I am happy.  What about you? Are you your best mornings or evenings?

 

Here is a couple of my latest photos.

 

easy4easy2easy

Daily Prompt/ One Word Prompt


Genie

Write a new post in response to today’s one-word prompt.

 

A Genie in a bottle. The first thoughts that come into play in my mind are Multiple System Atrophy patients, caregivers, families and myself. I personally felt, like a Genie in a bottle.

One illness, five little words, one doctor’s appointment can change everything from that day on. Watching little changes become bigger changes isn’t fun. Helping with falls, recreating meal preparations, setting appointments with various doctors, rearranging rooms, taking out furniture to make room for new furniture, interviewing caregivers, looking at any programs that may help off set expenses. This is truly a Genie kind of life.

Why do I say that? Simple, very few professionals have ever heard of this disease, which makes it difficult to get the help you need. There are improvements on literature, so your power becomes stronger with reading.

Getting insurance companies to understand this is a disease that needs to be covered is a task within itself.  I felt like the Genie in the bottle. I tried and tried, but the top of my bottle just wouldn’t pop off.

What is the best thing you can do if you need help but can’t find any? Join Facebook groups for Multiple System Atrophy. There are several.

This is one of the newest groups I created. A place to feel comfortable enough to speak your mind in private.

https://www.facebook.com/groups/374109256406780/

 

This is one of my older groups where you come to visit, be inspired and meet other families and patients.

https://www.facebook.com/MSAfeelingstressed/

 

This is a group for caregivers. It is an awesome group to find strength and answers in others who are going down the same path as you.

https://www.facebook.com/groups/168770156602557/

 

This is a group formed to learn more about Multiple System Atrophy.

https://www.facebook.com/groups/48942097968/

 

 

This is a group that I love. I found so much support here while my brother was still living. My friends from this group are still my friends today. A wonderful place to congregate.

https://www.facebook.com/groups/MSABuddies/

 

As you know by now, my birthday is this coming Saturday. I need still two hundred dollars to meet my goal. I am requesting a $1- any amount from you, my friends to help me reach my goal of $500.00. Can you help?

https://www.facebook.com/donate/566976957002931/

 

I wish this terrible, nasty, roller coaster ride of a disease on not even my worst enemy. Not only will it change your life forever; there will be times when you feel like that Genie in a Bottle.

 

 

 

 

 

15528025-aladdin-magic-lamp-on-a-desert-with-smoke

Could You Help Me?


https://www.facebook.com/donate/566976957002931/?fundraiser_source=external_url

 

My birthday is coming up on this Saturday, April 21. I don’t know how many of you followed me while I cared for my brother who died from a rare neurological disease, called Multiple System Atrophy.

I had been a caregiver for many years and never, ever saw a disease so ugly and demanding as this and I am not just saying this because my brother suffered from it. It took everything from him and almost claimed his vision. It left him a vegetable in a shell and was a very painful death.

For my birthday, I am asking you to donate a $1-any amount to help find a cure. I swear to you, you don’t want any of your family members to get this.

 

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

DSC00183Marsha's poemAl's funeral 2

Humble Thyself


Humble-

hum·ble
ˈhəmbəl/
adjective
  1. 1.
    having or showing a modest or low estimate of one’s own importance.
    “he was humble about his stature as one of rock history’s most influential guitarists”
    synonyms: meekdeferentialrespectfulsubmissivediffidentself-effacingunassertiveMore

  2. 2.
    of low social, administrative, or political rank.
    “she came from a humble, unprivileged background”
    synonyms: lowly, working-class, lower-class, poorundistinguishedmeanmodestignoblelow-bornplebeianunderprivilegedMore

verb
  1. 1.
    lower (someone) in dignity or importance.
    “I knew he had humbled himself to ask for my help”
    synonyms: humiliateabasedemeanlowerdegradedebaseMore

     

Today at church was so humbling to me. It had been a while since I went to church because of winter weather. With me having unsteadiness, snow and ice scare me. It felt good to be back among positive people.

I am so glad I went because there was a guest speaker and he was awesome! He is from Cambodia. His name is, Chhinho Saing. He has a beautiful family also. He spoke of his world from growing up to what he does today.

It touched my heart when he said he cried and cried every day because his mother was killed. He spoke about the Killing Fields and how it affected his  life. Have you ever seen this movie? I placed the Trailer of the movie below. Also, here is a family photo of him and his family.

He made me realize how spoiled and ungrateful I am at times. I have a roof over my head. I have freedom to make my own choices. I can choose what foods I like. The more he spoke, the more I thanked God for my gifts.

Chhinho is building churches in Cambodia. He is a believer of God and realizes God’s importance in our lives. He is also a blogger here at WordPress. If you would like to follow him, here is his blog address. I am so grateful for what I have and thankful that I have the sense to realize I have much to yet learn in my life.

shalommissioncambodia.wordpress.com

Facebook address; Chhinho Saing

Please join me in prayer as I pray for him to continue spreading the word of Jesus Christ.

IMG_20180408_0001

 

Multiple System Atrophy Awareness Month. PLEASE HELP US


We, the patients, caregivers, families, doctors, scientist, volunteers, medical clinics, doctors offices, Neurologist, all need your help.

I KNOW from experience this illness sucks big-time! I know the exhaustion families and caregivers go through while caring and watching their loved ones. I KNOW the fear that creeps into our hearts as we ask so many questions that answers are not there for. The rarity is here. We need help. We need answers. We need funding and we need it NOW.

PLEASE HELP, PLEASE DONATE A FEW DOLLARS, EVEN A STARBUCKS COFFEE’S WORTH.

PLEASE DONATE TODAY IN MY BROTHER’S HONOR AT THE LINK BELOW.

https://www.multiplesystematrophy.org/fundraising/donation

 

 

 

MSA 4MSA 5MSA 6img_20171109_163323_202793879470.jpgf553ae22d9e28063ac9715ed64bb697a.gifAl_his_life_and_MSA_Cover_for_KindleAl with kittiesAl's funeral 2581610_3386994068272_1072143716_3032701_841658784_n17861605_10210581946959525_7352910367946822984_nfb_img_1420175688829.jpgfb_img_1422410691264.jpggod cryingpurple azeliasopen-handsballon 2balloondad 6book 2cemetary day 2