Beautiful Christmas Cards From Wonderful Friends MSA & WordPress

It is the season to be joyous. It is the season to be with friends and family. Being in my home most of the time I never dreamed I would spend the Christmas season along with Al, my children and so many friends from the MSA Facebook sites and WordPress.

I wish I could somehow express myself in other ways for how thankful I am for you sending Al and me these beautiful cards. But alas, the only way I know is to say a big thank-you.

I was just at the hospital visiting Al. They are still adjusting medications. The doctor, Hospice and I are all involved with his care.

It was very stressful to my heart as I walked down the hall to hear my brother calling out.” I’m on fire, I’m on fire. Please Lord, I want to die.”

I walked in and he was no different from when he was here at home. Before I left the nurse was giving him one of his pain pills.

Al expressed to me that he was going to stop eating. If they didn’t give him a shot to let him die, he would starve himself. He did eat 25% of his lunch while I was there. This is about the most he has eaten in a few days.

I had them weigh him since I haven’t known his weight in a few months. He has lost another 17 pounds. All together at this point he has lost 62 pounds.

Yesterday the Hospice nurse and I had that conversation which I posted about last evening. Today, she has changed her mind. She said Al is declining. The doctor said the same thing. They believe a lot of it is his attitude. I tend to agree but only because the pain is so high.

I told them I want him to go to sleep. I told them to listen to me and hear what Al says. I explained how I felt about his quality of life all over again. So far all they are doing is adding one more pill to the two that he already takes.

I know it takes time to see if this or that works, but I can barely deal with hearing those words come out of his mouth. He is just plain miserable, there are no other words for it. I have to wonder how I would be feeling if it were me laying there with MSA. I may be wanting to die too.

It brought me some comfort that all of them listened to Al say the words he was speaking. They could not blame his remarks on my tiredness any longer. I think it opened up their eyes that he is serious. To him this is no game nor is it temporary.

I told the doctor if he can get Al comfortable, that this is my only wish for Christmas this year. He gave me a hug and the nurse gave me a hug. I didn’t want the hugs, I didn’t say what I did for any reason other than the truth.

Maybe because so many families can’t or won’t care for loved ones they are in awe of my involvement. I don’t know the reasons for anything anymore.

I don’t know what makes family refuse to call, text, or turn their backs on situations like this. I don’t get any pleasure out of going through this alone. All I know is that when Al passes I have no guilt to carry.

Caregivers go through so many emotions. So many questions as to why things and people act as they do. But I do know one thing for sure. I have a huge, huge support group through MSA and here at WordPress. Believe me, I could not have done this thus far without the strength that you have given to me.

Always remember that I will never forget those phone calls from MSA patients. I will never forget all of the Christmas cards from those that were once strangers but are now a part of Al and my life. The gifts that Al has received and me also are priceless. I want to thank Marilyn for the wonderful gift package she sent and I received yesterday. It was definitely a surprise, a nice one. Not only have you driven all the way here to meet us, you have forever remained in Al’s mind with the coca cola hat. Now on top of all that you have done for us, you send us gifts. Bless you for being the woman you are.

I pray with all my heart that Al is here for this Christmas, but if he isn’t, I know he will be looking at the brightest star on any tree. I know that he will be standing beside our parents, and I know without a doubt he will be smiling down at me and standing by himself totally free of pain.

I hope all of you take a moment and thank who ever it is that you thank, but do it, be grateful for that grouchy family member. Be grateful that your parents are still alive, or that those noisy cousins were sitting at your Christmas dinner table.

I have three children. One is definitely going to be here. One will not and the other has never let me know anything. So for this Christmas I will give thanks that I can breathe. That I can see and touch and feel. I have so much to be thankful for and believe me I will be giving my own personal thanks to God.

I want to thank;

McGrandma Paul from NC for a beautiful silver angel card.

Sandy R. from NC for Al’s coca cola bottle ornament. He is loving it.

The Culbreth Memorial UMC Children’s and Youth Choir, NC. A lovely card signed by Nolan, Ethan, Austin, Hailey, Reagon, Elizabeth, Cailin and  Jennifer.

Lucy D. from VA for the beautiful Christmas wreath card.

Pam Bower, from Canada. Pam is one of the most important people in MSA patients lives. What a blessing that I have come to know her.

Ron and Carol D. from NC, what a beautiful Christmas tree and fireplace.

Thank-you all for making Al and my holiday much brighter. You are all truly angels in our tree 4



I was streaming through my Facebook page and my favorite sites. It is amazing how we are all made in the same form but yet we are  different. We look at each other and recognize our own species. Except for changes in hair, eye, weight and height, the only thing that truly separates us is our language.

Many times in my own home town I stand in the check out line and listen to those around me speak who do not speak the English language. They look like me for the most part but I can’t understand them.

There are thousands of blogs out here in cyber space. I see topics about food, love, pain, abuse, children, adults. There are some on affairs, death, illness, laughter, tears. There are even educational blogs, and topics on how to build your own web sites. You can find blogs that sell online.

I see blogs full of photography, beautiful women, handsome men. Blogs from awesome waterfalls, vacation spots. It is just amazing. My personal favorites are inspirational blogs.  Al has a day each week where he fills his page with great inspirations. When I am down, I run to his page to get uplifted reading.  Ute is another friend I have on blog world. Her pages are always filled with wonderful sayings and inspiration.  Angel is where I can go when I want to have paw kiss chats. She loves cats and I certainly love Rhino our cat. What better conversation could there be?DSC00159

Although we don’t meet in person there are some on my blogs that I would truly wish to meet. Ute is one.  Debbie is another friend I feel very close to. We share so much in common.

There are several blogs I follow that I can find a way to boost my faith when I feel weak.  Len is one lady who is very strong in her faith. She has a way with words which help comfort me. You know words are so powerful. Hugs are nice, a warm handshake helps, but those kind words stick to our hearts and never let go.

There are also blogs that are about emotional strength that I love to read. Maybe because of Al I am drawn to these. I doubt if this lady realizes how much I depend on her blog, but I always watch for it to appear in my email box so I can read it. If you would care to pay her a visit, please do. She loves people.

Every morning when I hop on-line I visit Rob at  I get my morning java through reading his post. It is just like going to church but I get to stay in my jammies. Thank-you Rob for always teaching me about the Lord.

Marilyn, is a good woman. She and her husband actually came up last summer for a visit. Al and I both received the opportunity to meet her and her husband. Marilyn’s blog is upbeat, happy. I can learn about her awesome finds at goodwill stores. She lets me in on her secrets to staying happy. She loves helping others as she did lately, where she baked many cookies and gave them as gifts.

Then there is granny at I love to chat with this blogger. I am always ensured I will feel better when I have my visits at this site.

I have a wonderful friend named Julie.  She and I became instant friends when the time was that we thought Al had Parkinson’s. Julie’s husband has this illness too. I love to visit her site. I can see the beautiful birds she has living on her land. I can send well wishes to Ants and Ming and Julie and I have an understanding of what being a care giver is.

Bob has a large blog full of photographs he has taken. You can visit Bob over at He takes many photos at his local zoo. I just love visiting his blog. The last thing I do before going to bed is visit this blog. It makes me laugh with the numerous topics on jokes.  Love this blog.

If I want to dream and be able to visit a different country, then I go visit Viveka at She is awesome. A retired chef she lets me view recipes and photos of wonderful foods she makes. She takes a lot of photos and I get to see what her country is like. I just love this lady. We have been friends for a  long time.

Well, there are so many more to mention, but it is time to go change Al and reposition him, so I have to stop for now. I hope you enjoyed your journey with me through blogs I enjoy.

In the end we are all the same. We may look a little different but we all speak of love. The love of our home town, love of photography, good jokes, food and life, and of course, writing.

All I Want For Christmas

You know we are in charge a lot of the time in our daily routines. Anything from hopping out of bed and taking a shower or not. Getting dressed right a way or being comfy in our night clothes.

Drinking a cup of hot coffee or tea. Making the decision to eat breakfast now or later. So many decisions we make and a lot of the time we don’t even realize we are making those because they are habits or routine.

But in the last couple of days I feel like there is someone stronger than me. Something near me slightly pushing me out-of-the-way. Al has the full reign of the decisions lately and I just tag behind like a poor puppy that is hiding like he did something affraid of thunderstorms

I feel like thoughts are not of my own. That a greater power is among Al and me. All day Al has not acted himself.

I see things. I hear words come out of his mouth that I never thought he would say.

Today he looks different. His skin has sort of a transparent look to it. His fingers are a musky color and his nail beds are pretty gray.

He has spoken about knowing that our Mom is now waiting on him. He even told the care giver today that he needs to make a will now. Tonight he asked me to get the driver’s license out of his wallet of Mom. I had given it to him last year when he started on this roller coaster of daily pain.

He told me he wanted to hold it close to his heart. After we ate supper and I brushed his teeth, he picked up the license and he is holding it next to his heart. How can I not run from the room in tears? How can I not beg him to stop? How can I not scream at God to put a stop to this?

Those are the moments that all of my senses take leave and my emotions run high. Al cried and I cried with him. He began to talk about who was going to be here at Christmas. I told him and he said that he hoped I had a good time.

I told him he was going to have a good time too. I explained that I had wrapped some gifts for him today and he cried harder letting me know I was wasting my money on him as he would not be here to open them.

He told me that he wanted to buy me a Christmas gift. He said he wanted to buy me something that would always remind me of him. I couldn’t take it, I just couldn’t stand hearing those words.

I know in my heart that he has suffered enough. This MSA is a killer in more ways than one. If anyone has any extra change in their pockets please give it to I don’t want any, not even one living soul to have to go through the pain like Al has.

We are putting a blanket in between  his legs because they just won’t stay apart due to contractions. He is no longer sweating. Instead his skin is cold and his fingers like ice. The fans have now been turned off until he needs them once again. There is a sickening silence in his room when you walk in.

Everyone says God will take Al in his perfect timing, but come on, this is my brother I am sitting here listening to him talk like this. It is like he has accepted he is going to die soon and he is making his final arrangements. This is very, very hard for a sister to listen to.

All I want for Christmas is for Al to be at peace. Inside peace, outer peace, you name it. Free of pain, no more tears, no more screams of  pain, nothing. Quiet, peace. I don’t want to wait for the perfect timing. I am selfish. I want Al to be pain free now. I don’t want him to  have to suffer another restless night, and yet there is a part of  me that carries hope that this is a living nightmare, a dream and I will wake up and he and I will go hop in the car and find a flea market.

As I stated earlier, something is going on between the heavens and in this house. I know it. I can feel and sense it. I can do nothing to stop it. It is a power of giving up, a will to stop. A tired soul. A body tired of fighting.

As I sit here my heart is being squeezed like the life is being drained from it. I am not alarmed because I know it is from the hurt that is already starting the process of losing someone.

This is certainly one time I do not wish to be alone. I used to love quietness. I loved the peace of hearing nothing. Now, I want chatter. I want something to stir me up so much inside so  I can’t think. I can’t go crazy. I can’t cry. I don’t want  to face this any longer. I want it over.

I am a weak person when my brother speaks of leaving. I don’t want to cry right now so I am going to end this with All I Want For Christmas Is Peace For My Brother.



Please God, Please Help

I am writing only because I just want to sit down and cry my eyes out. I know I have written enough posts for today but I just have to write one more, this one.

I am so thankful that Al is home. More that I can be the one who watches over him than strangers. I love him where doctors and nurses do not.

Al has not been himself at all today. I have learned through the day that there have been no real expressions from him but tears. I have found out that his vision is awful now. He can not see the wonderful Christmas cards you are sending. He tells me he is dying because he knows he is getting worse.

I don’t think he is getting worse as much as he is suffering the medication changes. He is on too many bad drugs now. It is a war I tell you. A tug and pull war. If Al and I want him to be pain-free, then it is drugs that are used. If we want Al lively then we trade that for pain.

His love for his vintage cars has disappointed him today as he can not even lift one car with his arms. He is so weak that moving him from the bed to a wheelchair is almost impossible. He is just like a bowl of jelly and he feels very heavy with his body being dead weight.

He did eat lunch which is a good thing. He wanted pizza for supper so I ordered it for him. With his appetite not dropping I have hope to carry in my heart. But seeing him like this just sickens me.

Oh dear God please, please take my brother home. I beg of you to not let him suffer anymore. I am assuming that his body is trying to adjust to these new medications but in the mean time, my heart is breaking as I look at a body that Al lives within but I don’t recognize.

When is the point when neither of us can take it anymore. God promises to not give us more than we can handle, but Lord? I feel today that I am at that point. Please hear me speaking Lord. Heal him, either bring him back to me so he can live a little or take him home. I know I can’t boss you God, but I can tell you my inner feelings, so here I am.

Naked and laying at your feet asking for mercy for my poor, sick brother, Al. Amen





Daily Prompt; Fearful Symmetry, Daily Prompt, DP

Pick a letter, any letter. Now, write a story, poem, or post in which every line starts with that letter.

Photographers, artists, poets: show us SYMMETRY.

The letter H

Hell is here today

He is on a kick

He is crying

He is so sick

Help me Lord

Hear my cry

Help raise his spirits

He wants to know why

He thinks he is being punished

He doesn’t understand

He thinks he is the only one

Having issues in all the land

He was on a roll

He thinks he’s being sued

He saw clothes mailed to him

Help me what do I do

Hell here today

He is so confused

How did suing someone

Hover from clothing that is used.

Help my nerves

Help his tears

Help his body

Help take a way his fears.

Written by,

Terry Shepherd