Oh the Valleys we Travel Through on our way to Heaven


It seems so right that I changed the name of my blog page to Who Am I, months ago. Why? Because anymore, I don’t really know who I am.

I know I am a child of God, but here on earth, I just don’t know. I know I am a mom to three and a grandma to several, but some days, I don’t feel like a good mom. I have one child who pretty much has disowned me, it seems. I have begged, pleaded, called and text but no answers are provided for me on what I may have done.

This has turned my health upside down. My blood pressure is now messed up going higher than lower. I am stressed with sadness that keeps my veil of happiness covered by blackness.

I have apologized, sat for hours wondering what I may have said or done without realizing it may hurt others. I am getting sick and I find myself wishing I was at the end of my journey here on earth.

I snap out of that thought though because I am not really ready to die yet. I even called my primary and neurologist and have spoken to both about this up and down blood pressure problem I am having.

I know that my diagnosis has been changed from Parkinson’s to probable MSA. This sickens me. Not so much because it will shorten my life; but because I won’t be as lucky as my brother was in having a sister to take care of him. I will go through this alone with God beside me; which means I am truly not alone.

Life has not been a bowl of cherries as of the past few weeks and I am grateful that Spring as officially arrived and I can get lost in my camera once again outdoors.

Oh the valleys we travel through on our way to heaven.

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Memories for all time


I made your photo my cover
There really could be no other

It never fails to amaze me
That your photo drives me crazy.

It’s been five years this March
When you went to the golden arch.

I know you are a happy guy
I don’t even question why.

For God so loved you so
He saw your pain that glowed.

He raised you and stood you up
You drank from his healing cup.

I hope you understand
That I’m still living on this land.

My heart still aches for you so much
I wish I could reach your hand and touch.

You’d say nothing to me I remember
You started this one September.

Multiple System Atrophy
Brought nothing buy agony.

You suffered more than any I know
You deserved your time to go.

I’ll always love you my brother dear
In my heart I keep you very near.

Til the time comes and it’s my turn
Your memories in my heart will burn.

I miss you dear brother Al.
You will be gone five years, March 24th, 2019.
Love you so much,
Your sister, Terry Shepherd

 

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I am Strong Because I have a Shield of Love


Don’t ever tell yourself, “I got it made” or “Life is a piece of cake.” I swear as soon as you say that; you will be shut down.

This has been a rotten week. I am glad this is Friday. Hoping for a new week with less stress and sadness.

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I was with my family during the loss of a family member. A viewing one day, the funeral the next day.

I have  had issues with a family member also. It is plum crazy when the issues arise and for the love of God; I don’t know what the problem is. The other party won’t open up and therefore I am left with a feeling of being helpless and lost.

I also lost a very close friend to the same disease that took my brother; Multiple System Atrophy. I tell you; she was one strong fighter. She carried hope and a bright spirit to the end.

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I wasn’t expecting it and my emotions ran a muck. Maybe with a prior funeral and then this major loss, I went over the top with my tears. I will miss you forever and ever Bonnie.

I am a pretty emotional person. With the final encounter; I found my blood pressure rising, my neck was  hurting along with my head. My stomach ached and I felt like I had been tossed to the wind.

My girlfriend has been helping me through this. She has reminded me of how to take issues I can not fix and give them over to the Lord. I am doing this and I have found myself calmer and now laughing again. The problem isn’t fixed but knowing God has this covered and will fix it; I can go about my life.

She told me something that I really like repeating over and over in my head.

Lord, let me see through your eyes. Let me hear through your ears. Let me love through your heart.

She also gave me a precious song to listen to and I play it often. It brings me comfort.

 

 

So although this week has been a big blow to my spirit; I have also learned I am strong because I am protected by a shield of love.

And How is Your Wednesday?


Hello my friends. Wow, you should have seen me this morning. I drove with both hands on the proper position of the steering wheel. I probably drove right at the correct speed limit. Why did I do this? It was the first, actual day of winter weather I drove in for 2019.

 

I have a much smaller car and my fear has grown each year of driving in the snow. I am sure I could have made a great poster child for driving “Winter 2019.” Not only was it causing me to be more cautious, I was forced to turn around at a certain area because of road repair. I had to go all the way around to get to my destination and I also got stuck by a train going through. Thank goodness my patient was graded an A+ today.

 

It is cold out too. Lately we have seen more Fall like temperatures but today the high is supposed to be 25 degrees here in Northern Indiana. We really don’t have much snow to talk about. I can see the grass peeking through the snow. Many have been upset by the lack of snow.

 

I live in an area where there are many lakes. Winter activities have been placed on hold while waiting for the white stuff to fall. I haven’t minded at all. I don’t like cold and I don’t like driving in snow either. I have to admit though, while sitting at my living room window and watching it snow; it was pretty.

 

I don’t have a lot on my plate for today. I have some meat cooking in my crock pot for supper. I cleaned yesterday and have no great energy for cleaning today. I am just enjoying my afternoon now and ready for what the evening brings.

 

I’m going to go to another subject now. Sweating, I know, it sounds gross doesn’t it. I remember back when my brother was still here with me. He had MSA and it caused him heavy, no not heavy, I would say profuse sweating. For about three months now; I am so over-heated almost daily.

 

I think I even mentioned last week that I still have my air-conditioner on. Last night was the worst night yet. I woke-up at 1 a.m. I was sweating so bad, I was soaked all over. I jumped up out of bed and thought to myself; this must be my sugars. My numbers must be low. I checked it and it was fine. I can’t help but wonder if I am going to have some of my brother’s sweating issues. I go to the primary doctor next week and I will bring it up.

 

My brother had a neurological disease and I have one similar to it; so I can’t help but wonder what is going on. I’m also going to see if Medicare will pay for me some diabetic shoes. Last year they would not after having covered them for years. I was told that because of cut backs, my feet had to be deformed. I am really struggling this year with my feet. I don’t have the pads on the bottom of my feet due to Diabetic Neuropathy. My feet feel like they are walking on cement floors. They hurt, so I’m going to ask again. I hope they can help this year.

 

How is your day going my friend?

 

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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

The Visit


THE VISIT
 
I can’t get it out of my mind. I keep thinking about the dream I had last night.
 
With the illness I have; I usually have terrible nightmares, always waking up before I die, but to see my brother in my dream and be able to talk to him was bigger than anything I have experienced.
 
I am a thinker by nature so it is not unusual for me to have been pondering on how I made this dream happen. Can I make it happen again?
 
Alvin was healed. He was standing tall. He wasn’t crying and he didn’t act afraid of life. He smiled that big, familiar smile I always saw.
 
We talked. In my dream it didn’t seem like we chatted for a very lengthy period, before I woke up, but I remembered it and i still remember it.
 
I have definitely moved on since his passing. I have managed to hide my tears and sadness. I have laughed among friends. This is the part that has moved on.
 
There is an injured snail crawling inside my spirit though. The feelers come out when I am all alone and this is when it seems like only yesterday; I walked into his bedroom and found he had passed.
 
The dagger still punctures my soul and heart. The eyes well up instantly. I sit. I remember. I cry. I don’t think we ever truly get over the death of a loved one.
 
I don’t know if we ever heal completely. It is complete though. He was born. He lived. He passed. I think there is a bigger torture when there is no final stage of life.
 
When friends or family hurt us and it is never settled. That sword just keeps twisting and stabbing. The mind rolls over big hills and stumbles over boulders as we try to find peace that is now broken.
 
How do we go forward? How do we hide the memories of what once made us smile. How do we hide the tears in our daily living?
 
It is so difficult but this is something each of us has to deal with and lay to rest. God placed us here to send the message out to others about his love.
 
God gave us feelings so we can love and hurt and hug and smile and heal. God gave us ears so we can listen to his message, a body who can accept a hug from another person.
 
We must give these heavy burdens to God. We need to carry our faith in large baskets, and know that whatever the problem; God will carry us through it. We have to believe this.
 
Other wise, we will be injured creatures, walking this earth, thinking only of our pain. We will not be able to reach out to others who need us or are hurting.
 
This dream that I was honored to be a part of was a wonderful vision. A gift from God you might say. I have told God so many times how my life will never be the same, how much I miss my brother.
 
God showed me last night, in my dream, that no matter what pain I am going through in my waking hours, he is right there, holding my hand, guiding me and showing me his love.
 
Thank-you God, for allowing the visit to happen between me and my brother.
 
Written by,
Terry Shepherd
October, 15, 2018
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Neurological Diseases


If only we had a brain! Remember that from the Wizard of Oz? Well, who knew the brain could be such a problem. It certainly is when you are faced with Neurological Diseases. Doctors can’t fix what they can’t investigate.

 

You need to have expired here on earth in order to study the brain. This was the case for my brother and so many others dealing with this issue. I went to be fitted today at an Orthopedic specialist for my new shoe and brace. The hope was, that the curling of my toes may stop curling any further.

 

After so many tries of various gadgets the sad news came that my brother used to hear. We just can’t help you. Perhaps a neurological therapist.

 

I have not heard of this but I am willing to look one up and try if it is not too far a way. The doctor said today that there is a possibility of my toes curling so far under that I would walk on the underneath of my toes. Ouch! Just thinking and visualizing this made me cringe.

 

The good news is I am no worse off for the moment and yet no better. The hope that those with this illness carry for a cure or some gadget to make life a little easier to manage is our dream.

 

I am not crushed. I pushed and studied and joined groups to learn about Multiple System Atrophy and I will fight just as hard for myself as I did for him and for others.

 

My son is going to come over tomorrow and try to tighten up the scooter I have. It is wobbly in the steering and the seat seems loose. Of course it isn’t new. It is the one I bought my brother. If it doesn’t help, I may have to see if I can get a more sturdy one.

 

This doesn’t mean I will give up walking, oh no way! I do have bad days when standing is very difficult, and on those days, I would ride the scooter. I wonder if there are any programs that help to purchase or donate one? I don’t know. I know Medicare helps but there is a 20 percent part I would have to pay and I remember from my brother, that is pretty expensive just on that part.

 

Guess it is time to start praying for some more help. Things will work out. I know they will. I know my condition won’t get better and I accept this. God won’t give me anything I can’t handle and he will give me the strength to get through what he gives me.

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I was disappointed tonight. I was invited with two friends to go to a church and watch a play and then have ice-cream sundaes afterwards. I got all dressed in casual and went downstairs to the community room.

I sat down and began chatting and instantly got the burn on top of my head. I thought to myself, Oh no, I don’t need this now! I immediately took some pain medicine but within ten minutes I had the burning on the crown area, top front and back of head close to the neck.

I knew immediately I would not be able to go on the outing. I explained to my friends and I hope they understood backing out at the last minute. I just couldn’t do it, even though I saw the disappointment on my friend’s face. I knew I would be sick to my stomach and if I didn’t rest’ the burning would get worse.

This is all caused from my Dystonia. Something triggers it and it always causes pain in the neck and shoulder but the burning on my head is not fun at all. I have heard it compared to cluster headaches and Migraines.

I put some information here so you can better understand what I have. My diagnosis is actually; Parkinsonism/Ataxia/Dystonia.

The Parkinson’s part has affected my split-second thinking and short-term memory. I have internal tremors also. My head sometimes tremors and can be seen. The Ataxia part is what I deal with on a daily basis. Falls and balance. Once I am up and standing for about ten-fifteen minutes; I totally become weak.

If I am walking, it doesn’t seem to do this as bad. Baking, doing dishes, cleaning the tub, housekeeping, all cause me to lose my balance. I have already explained the Dystonia. I wish I didn’t have any of this. My brother had Mulitple System Atrophy. My Neurologist has suspicions about me having some of this too, although it is not hereditary. There is more information proving that environmental. Things like electrical towers, pesticides are something that my brother and I were surrounded by. The true test is taking, Sinemet. I have refused thus far because I am not ready to see dancing flowers or quit driving as my brother had experienced. If I do take the medication and it works; I have the Parkinsonism. If I take it and it doesn’t work, I have the Multiple System Atrophy. I don’t know if I really want or need to know. What difference would it make? It wouldn’t fix me, so far now, I am not taking it.

The headaches will leave. They usually last from one-five days. They are coming a little more often, so I may have to break down and try something else stronger. The neurologist is just waiting for my call to say I am ready. For now, I am going to do what I usually do. I will turn on the television and lay down and ask God to heal me once again.

SINEMET®
(carbidopa levodopa) Tablets

DESCRIPTION

SINEMET® (carbidopa levodopa) is a combination of carbidopa and levodopa for the treatment of Parkinson’s disease and syndrome.

 

 

https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/

 

 

One of the most common types of dystonia found in Migraineurs is cervical dystonia, also called torticollis. Torticollis can be primary or secondary. This type of dystonia can involve one or more of the muscles of the cervical spine, neck and upper body including shoulders and upper chest.

In the end, it is hard for people to understand how in five-to ten minutes, I can do a complete turn-a-round. I don’t look sick unless you see me weeble-wobble and headaches don’t show on the outside. I just know me and I know how those burning headaches feel. So for now, I will talk to you later. I’m going to turn the TV on and rest.

 

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A Conversation about Multiple System Atrophy


“I can’t do this anymore!”

“Do what?” the mind asked.

“This bouncing back and forth. Keeping my faith. Thinking everything is going to be alright. It’s just too much!”

” I understand what you are saying. I play this game every day, sometimes several times per day. It just gets old. I look down at my body. I see the crepe skin, the bags under my eyes. I see the smile try to widen and the reflection of tears welling in my eyes. I see my swollen legs and feet. I feel the sick feeling in my gut.”

The two sit in silence digesting each other’s words. Shame and guilt over the battle of the thoughts. Realizing there is not a damn thing that can be done. No cures have been found and it doesn’t seem enough people really are aware of the  need.

Thinking back to the days of bright sunshine. “Remember when we used to walk down to the playground and sit in one of the black, leather seats hooked up to a metal  chain? We pushed with our legs. “Remember when we had stronger legs?” Silence.

We felt the breeze brushing our hair and the feeling of freedom and joy. Wow, those were awesome times! “What happened? I don’t get it! It wasn’t supposed to end up like this, for heaven’s sake!”

“Today, our legs swing, but not the way we like. They swing when someone tries to sit me  up on the edge of the bed. They swing and feel like a wet rag when they believe I need to get up and take a real bath.”

“Why don’t people just leave us alone? Can’t they see we are humiliated by them having to witness what our bodies can’t do any longer? Damn it! Just leave us alone. We just want to be left alone and die with some dignity!”

“They love us dummy. That’s why they do the things they do. They don’t understand how we feel just by looking at our faces. They have to read our eyes! How can they feel our pain when we can no longer say a word?” Silence

Letting out a deep sigh, the other follows the lead. “This sucks, you know. We are no longer someone they can count on. They are being forced to ponder on what their life will be like once we are buried and out of sight.

“Yeah, you are right. We ought to feel more compassion for them. We promised them the world and forever, and we are now giving them a view of less time.”

“I agree. Let’s give them a break. Let’s try real hard not to show the pain we are in. Let’s try to show appreciation in any way we can, that they are still sticking beside us, taking care of us. I wonder why they do that? They could just take off and find another life.”

“Dummy, they stick around and do what they do for one reason.”

“What’s that?”

“They love us.”

Written by,

Terry Shepherd

06/26/2018

 

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Friends for Life


There are people worse off!
Yes, I realize this; but it doesn’t help.
Quit your whining!
I am trying; but it hurts.
Find something to do!
I am. I am trying to clean my house without falling down.
Why don’t you get off disability and get a job?
I miss work so much. My own paycheck. I wish I could.
You sure do sleep a lot!
Yes, I do. I get fatigued so easy.
You are the laziest person I ever saw!
If you only knew how hard I try to get through one day.
I don’t understand what’s happened to you!
Neither do I. It came on so slowly and now I’m fighting each step.
You never go out. Don’t you have any friends?
I have hundreds of friends through my support groups. Why don’t you take me out somewhere and help me through it?
I don’t understand you at all!
I don’t understand your lack of empathy and compassion. I thought we were always friends to the end.
 
Written by,
Terry Shepherd
 
Dedicated to those who’s illness has made a difference in their lives.
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