Hello. I'm doing fine. Just a note to let you know all is well. I have had a lot going on as usual. So much for my short updates. March came and went before I had a chance to finish typing this and then something would happen I'd want add.
This is going to be all over the place, some rambling thoughts, and sort of long.
I had a rough start at beginning of the month dealing with my "woman" time. Since my diagnosis, it just wipes me out like never before. I just want to sleep, not much else. And my emotions are all over the place. I have heard that is common for other female PALS (people with ALS). So, I am not as worried, though I now hate the beginning of the month, used be because of bills. But I can handle it, I have other things to think about these days.
I have met several PALS online from all over. I have made many friends. We share journeys, give support, and offer each other hope and prayers. Makes the ride easier to bear. Everyone I have met has been an inspiration
I recently lost an aunt after her second battle with cancer. Is sad as it is, I know she is in a better place. With any loss, it brings family together. I was able to see aunts, uncles, and cousins I had not seen in quite awhile. There is nothing like the love of family whether near or far, distant or close, we share a common thread that will keep us bound forever.
I never really thought about death much, until I was forced to realize my illness has no cure and that death is the only fate for PALS at this time. I was fortunate in my young life that death kept its distance. I had both sets of grandparents and great-grandparents for a long time. What a blessing! I figured with their genes I had longevity on my side. Oh well! My first real loss was my grandfather about 13 years ago. Cancer took his life. The strongest man I knew withered away. It was then I realized the circle of life and I was in my mid-20's. I knew he was at peace, probably planting a rose garden or watering the luscious grounds I envision in Heaven. When I lost my great-grandparents who were in their 90's, I thought what a life! How could I be sad? They saw so much in their long lives. When I lost my grandmother to Alzheimer's a couple of years ago, I took comfort in thoughts that she was herself again. She would be talking and babysitting the children until their parents came Home. Since I was older, I found peace in my beliefs. I wish Mathew had a stronger belief system so he could/would find comfort in knowing I will be okay and so will he. I can't attend church without losing myself in uncontrolled emotion but I believe and I pray and for me that has to count for something. How do I guide my son when I have no voice? I was given some book titles but how do explain death to a child? It kills me as a mother/teacher to see/hear/know his fear and anger and be unable to help. Any suggestions or ideas?
Nurses on Wheels continues to do a wonderful job. I now get showers daily. I love it! My CNA's are great. I have my favorites. I just feel comfortable with some and they know me, (Alisa E., Alicia P., and Jessica Z.)! Marie was my RN this month. I love her, too. And, I now get some extended care during the week; so mom and Monty have a little help. (Jessica Z. And Jessica B.) Rhonda the Chaplain comes weekly and keeps my spirits in check. She reads and we talk. Every visit begins and ends with a smile. My PT, Norbie, comes twice a week to work me out. We laugh, too. He is a good guy. My Aunt MA comes on Thursday afternoons when she can and now a cousin, Viola may come on Fridays.
The biggest problem is transferring me from place to place. Like from the bed to the shower chair or the chair to the potty chair and vice versa. I know Monty and Mom wish I was 100 pounds lighter. No chance since my mobility is going fast. My left arm feels like a stump and my right is not far behind. My legs are weaker. My left more than my right. My hands look ugly. My fingers curl. I used to love to do my nails and keep them up. People would often ask me if my fingernails were real and I would proudly say "yes." Monty would tease me about always doing my nails. Sometimes I would paint them crazy for the kids to notice. It made me a "cool" teacher. Happy memories. Now I have someone come in to do them. Thanks to my sister in law Christy and my sisters, I get my toes done. Am I lucky or what? I can't complain though I found doing my nails relaxing. Now, I really relax. I do get an occassional twitching spell because of the hyper reflexes but I have not kicked anyone, so far. LOL!
I hate using a potty chair. When you want/have to take care of "business," privacy is nice. I used to like my "library" time. We need to widen the door, yesterday. So, if anybody knows someone, please let us know. We have moved our bedroom around yet again. I think we got it this time. I haven't given up on Ty. You never know.
Mathew has started baseball season. He is playing on the Hooks. He is the catcher. He loves the gear. Hopefully it will keep his attention, since he will be in the game most of the time. His first game was not good. They lost. I was worried. They made a comeback in their second game 21 to 7! They have won their last two games by 1 point! I am excited. I will be cheering my son on every chance I get. He has some early games and early is hard for me. I hope I will make it sometime, with my meds I have a hard time getting up. I wear my Hooks t-shirt with pride. Watching him glance to the stands for support and his pride shining through is priceless. My heart melts. My beautiful boy is growing up. Most of his games are Tuesday or Thursday and Saturdays. If you have time I am sure he would love it if you went. I can email you a schedule.
I went up to LJE for Chilifest. It was a beautiful day. The turnout was great. I got there just in time to see my former students sing and dance. What a sight! They are growing up. I saw my friends and remembered the chaotic preparation for that day. I still miss those days. I would trade places with them even on a TAKS day in a heart beat, even still. Teaching was my passion. I have fond memories being in classroom. I hold those close to my heart. My last class, the ones I had to leave midterm were angels. When I see them at school and my heart aches. They were an extraordinary group of children, full of compassion, concern, and love. I struggled to be there everyday I could because I truly loved them. Yes, I did, even the special ones. Funny how those make a mark in your heart you can't forget.
Spring Break came and went. The Rayz game was great. They won in overtime. Mat threw the puck. I had support from family and friends. There is nothing like the love and support of those who mean so much. I sat in the handicap section, which are great seats. Everyone came up to say "hi." The people who watch the seats were not sure about letting them through but there were so many. I think they realized they didn't have much of a choice. I had an entourage! We didn't do much during the break the weather was crazy for a while.
Monty had a crazy work week and was tired. Spring Break on the island is wild.
We had a birthday "fiesta." We celebrated mom's and my birthdays. Mom's was on the 24th and mine falls on Easter Sunday this year. We had so much fun! We had an enchilada contest. My non -Hispanic, cousin's wife is the reigning champion, two years running. She can make some awesome chicken enchiladas. My grandma won for best dressed. She looked so cute. My sisters and I bought Mexican dresses for the occasion. We played Chalupa or Mexican bingo, we remininced , and laughed. My crooked smile on and the uncontrolled laugh came out a time or two. We made Easter plans.
The Allen's were down these last few days. Mat spent time with his beloved Pawpaw. They are two peas in a pod. They have the same energy. We went to dinner a couple of times, watched Mat practice and just spent time together. They took Mat out and about. He spent time with his cousins. I love to see them. They are younger and so animated. Any time we spend together is always fun. Mathew didn't want them to go. But they will be back. I must say they are an awesome couple. They will celebrate 50 years together in June. What a beautiful thing in our day and age. They compliment each other so well. I love them dearly.
I got some new email addresses. So, for you first timers, "welcome to my life with ALS." Feel free to share this with your friends and family. Share my email address with them. I read everything I get, though responding is hard. I can add them to my contacts and send smiles their way. I am a place they can share things with or vent; remember I can't speak. So confidentiality is not a problem. LOL! I love getting email and hearing about your lives.
I have continued to receive messages of hope, prayers, jokes, inspirational words and stories. We have continued to receive dinners, some money, and most of all love. In the olden days, I would have handwritten notes of thanks by now. Know I thank God daily for all of you. I thank you in my heart with all the eliquence and love one can say. I am blessed with so many wonderful people in my life. I know I have said this to you before but I will tell you again I am so glad to have you in my life. You make my battle worth fighting and easier to bear.
Debra
live, love,& laugh