Daily Prompt/ One Word Prompt

DAILY 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.

 

 

 

 

 

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.

What a wonderful Gift to Receive

December  1st  is  the big day. The day to help my brother .  I  posted  last evening  but now  have to  give  you  the  proper  address .

 

Https://  www.crowdrise.com/givingtuesdayformsa/fundraiser  /terry shepherd

 

Thanks  dear friends

Terry Shepherd

 

Hello my Extended Family, Yes You

Coming home from my daughter’s house was the hardest thing ever. Walking into a quiet home was disturbing to my soul. No sounds from the air mattress machine. No Hospice or caregivers. Just me and my thoughts.

I couldn’t take it. Too many stabs at my heart and too many tears so I had to make a change.

Starting yesterday, I painted my living room. Today, I painted my bedroom. My living room had not been painted since I moved here two years ago. This past fall I took two walls and put up that new paneling that looks like lime stone bricks. Yesterday I painted the third wall the color of the cement. It is a very pale chocolate. It warmed up the room and brightened the panel boards.

My bedroom was white and now it is pink. Somewhere between a soft pink and a pink, pink. It took me all day. I guess because I am getting to be older. Paint a little, take a little break, but it is done now and I am proud of what I have done. We shall see how my muscles feel tomorrow morning from having to pull out furniture from the wall and moving my bed from one wall to another.

Tomorrow, I am going to the room I have tried so hard not to walk into. Al’s room is the last room to paint. I bought an antique, light yet warm peach color. This room will always hold memories of everything that has to do with Al, but now it will also hold a part of me too.

It will be my antique room. There will be two, three foot lit Christmas trees. A rocker that I inherited from my girlfriend. My mother’s cedar chest. Of course Al’s TV is still there. All of his collection of cars will remain where they are. The many coca cola framed photos will come down and I will replace them with my Victorian children framed pictures.

Al’s big coca cola clock shall remain hanging and other pieces he loved so dear. For now the rest will be placed in his closet until I decide what to do next. I am looking for a short, old-fashioned couch to place in there. The idea is to walk in and feel warmth and vintage. I can watch TV or DVD’s or sit in quietness and enjoy the lit trees. It will always grace Al in my mind but since we are siblings, I figured why not add a little of me too.

I wanted to add a piece of information I learned today. The debt of the Social Security check is now been relieved. The treasury department interceded and stopped the payment to Al’s account. Therefore there is nothing to pay back.

The nursing home debt is still waiting and I am trying very hard to save monies back for it. I want to thank each of you that have donated to the debt on Pay it Forward. Thank-you so much. Every little bit is helping, let me tell you!!!

https://www.giveforward.com/fundraiser/k1d4/unexpected-2-expenses-from-my-brother-s-death

Also, I want to thank anyone who has purchased my first book, Dahlia. It seems people are purchasing it through Amazon.com. I can see the purchases but I can’t see who buys it, so thank-you. You know who you are.

My Brother

I miss my brother terribly but slowly the heart does heal. Life ticks by whether you want it to or not. People walk and talk, yet my mind keeps going back to two weeks ago when I looked at my brother’s face for the last time. Forever imprinted in my mind I visit this place many times daily.

Yesterday to my horror, I was informed I have two debts to pay from my brother’s passing. I won’t go into long details but I will say that one is the nursing home he was once in and the other is the repayment of his last Social Security check he received in March.

I am trying hard not to be embarrassed by what I am about to ask. I took good care of my brother. I completed the goal of having him pass away at home, but it takes money to care for others and I did this with no hesitation, giving and providing every need or desire he had.

Now, alas I have started this fundraiser in hope that any monies donated can be put towards these two bills. I am so sorry to come to you, but I am out of extra money to do this task.

Here is the link to the fundraiser if you should choose to help out in even the smallest of ways. Thank-you my friends for taking the time to read this.

 

https://www.giveforward.com/fundraiser/k1d4/unexpected-2-expenses-from-my-brother-s-death

 

Thank-You

I want to take a moment and give my heart of thanks to all who helped with the donation of monies to purchase my brother’s tombstone. I can not express my gratitude enough for what you have done.

Here is the link to what people did for Al.

https://www.giveforward.com/fundraiser/4gx3/burial-expense-tombstone

 

Nasty MSA

It’s really been a rough few days. I have gotten into it with Hospice on more than one occasion. I have told them I need more help from them, as far as their nursing part goes.

I am still struggling with being so tired but my blood pressure is down quite a bit. The medication I now take makes me sleepy and I feel guilt by falling asleep when my caregiver is here along with my girlfriend.

Everyone inside this house is treating me like royalty. It doesn’t feel familiar. It feels strange, but I don’t fight it anymore. I accept with blushed cheeks and will never forget what others are doing for me.

Al’s illness is now in his bloodstream. It has taken over every part of his body and now has entered the blood.  It has nowhere to go so it is seeping out of his eyes and mouth. He has a big blister on his feet  that is filled with the illness. I pray constantly that God takes him home.

Both Al and I have had what we feel are enough. I pray that if God wants me to learn something else from his sickness, that he opens my eyes so that I may see it. It is breaking my heart, watching Al stuck inside of this shell.

I can see almost exactly in what area Al’s heart is failing. Yesterday his hands were not swollen. Today, once again they are. His leg will swell and then later go back to normal.  His skin is getting weak from being in bed so long.

We are having huge issues with his catheter plugging constantly from his kidneys shutting down. I and the caregivers are pretty busy trying to keep Al comfortable. Now the new blister is hurting  him but I dare not pop it or touch it.

I have him protected in case it does cause a mess. I just pray, wish and hope this ends very soon. If I could think of one thing that is keeping Al from going to heaven, I would move mountains to make it happen, but I can think of nothing.

I want to let you know that I have worked very hard at making and paying for all arrangements for Al. I hope that I am prepared in every area I could think of. The tombstone was the final goal, and now thanks to you, my friends, that goal is getting closer to being met.

I had the wrong link so here is the correct link if you would care to help.

 

 

 

https://www.giveforward.com/fundraiser/4gx3/burial-expense-tombstone?utm_source=facebook&utm_medium=graph&utm_campaign=vanity_page&fb_action_ids=10201927411201540&fb_action_types=give-forward%3Ahug&fb_source=other_multiline&action_object_map=%5B543348005772375%5D&action_type_map=%5B%22give-forward%3Ahug%22%5D&action_ref_map=%5B%5D

Tombstone Fundraiser

I have a fundraiser where I am trying to get help for Al’s tombstone. I have the funeral paid for and the plot, but I can’t seem to get the funds for his tombstone. I realize he doesn’t have to have one, but I want him to because I love him. Here is the link if you would be interested. Please share this with anyone you think may help.

Thanks my friends.

https://www.giveforward.com/fundraiser/4gx3/burial-expense-tombstone?utm_source=facebook&utm_medium=graph&utm_campaign=vanity_page&fb_action_ids=10201927411201540&fb_action_types=give-forward%3Ahug&fb_source=other_multiline&action_object_map=%5B543348005772375%5D&action_type_map=%5B%22give-forward%3Ahug%22%5D&action_ref_map=%5B%5D

 

 

 

 

It Won’t Work, Now This Topic is Dead

I have went on and on trying to please this one and that one. Afraid of hurting feelings. Trying to do what was right for Al.

In the end I got the final results this morning. Al is too sick. His body and height are out of the guidelines.

I have deleted the fundraising post and the explanation post.

I will continue to tell Al that I will look and that I am aware of his wishes, but in the end unless a miracle from God takes place the topic of his donating any part of his diseased body is dead.

Thanks for listening to my frustrations, my ideas, and my apologies. I am sorry to ramble on. I was just trying to help someone I love.

Faith, Hope and Friendship

It is Thursday evening,7:30, and all is quiet. I feel like I am waiting for a package to arrive and maybe I am.

I have had some information for a week now but was waiting until I could tell you about it until I knew I wouldn’t break down half-way through the post.

I will say first off that anyone who prayed for Al and me and the situation about Hospice being involved did a great powerful job of praying. The prayer was answered. Hospice is going to be involved all the way.

The hours have been split between Hospice and the Day Care program. Al will have his bathing and dressing done between all of them. He will have 24 hour nurses at his door. He will be checked on regularly.

He even gets to remain active out in the community. I thought this program would end once he came home, but God wants him to be as happy as possible, so it remains.

I had the meeting with the State, the Day Program and the facility this morning. It went well until the administrator spoke his mind. He was considering not letting Al be dismissed because of the pressing debt we owe this place.

I was torn in pieces. My brother wants to come home so bad and yet he still owes over $3,000.00. To have to tell Al that he could not go home was enough for me to want to run and run and run. Just hide, never to have to see Al’s sad face and tears galore. I couldn’t deal with it.

Instead I spoke up and told him what I thought and what the Ombudsman thought and I told him that I would be following the directions of the Ombudsman, and that he would release Al tomorrow as planned or I would call the State back right here in the office in front of all.

He smiled that wicked smile, and then said I better make sure that bill is paid. I have 11 days left if anyone at all would like to make a small contribution. Any amount is helpful. The address is

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

I won’t ask again as the time for this fundraiser is almost expired. I want to thank all of you who have already helped and I want to apologize for asking one more time for help.

At this time, the hospital bed, wheelchair and lift chair have all been delivered. I have his bed made and the door is remaining open to open the room up some.

Excuse me while I choke a little. I told myself I am not going to cry. It is just I get tired. Tired of fighting everyone to get what Al deserves. Tired of the family that is left that never comes to visit. Tired of fighting the system, tired of the nursing facility, tired of seeing bottles and bottles of medicines and tired of sad news.

The news that I learned last Friday was not good. Al has another diagnosis on top of his Parkinson’s Disease. It is called M.S.A. It mimics Parkinson’s very much, but there are changes that happen that can place it in detailed form.

So many things have fallen into place this week. Why Al sweats so bad, why his illness has progressed so quickly. Why he cries more often than not. M.S.A. attacks the spinal cord plus the central nervous system and messes with the electrical system. His heart doesn’t know how to beat properly. He can have heart beats up to 300 per minute. The sweating is involved. Depression is very high. M.S.A. stands for Multiple System Atrophy.

I didn’t realize that the doctor had faxed this new information to the facility this week. I couldn’t figure out why so many were coming up to me and patting me on the back offering, I am sorry’s.

Then someone told me they knew. They knew what I had been running and hiding from. They knew that Al’s life had changed. Now I know for sure why Hospice is involved. Now I understand why Al is coming home on this precise date.  M.S.A. has a much shorter life span, and the news that I had to listen to from the doctor was, Al will probably not be here in six months. I want him to have everything he needs to be comfortable. He will end up aspirating from this. Food will go down into his lungs and this will take his life. I want you to have nurses around the clock for you to utilize.

These words still haunt me a week later. Life is going to be the best I can make it. For Al and for me. I am going to make a new memory out of every single day he has left. God knew all along what was going to happen. His plan was perfect.

So from here on out, it will be all of you, Hospice, Day Program and me, and I will get through this, because God knows I can do it.

Each day I will carry hope, faith and friendship until the very end.

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