Saturday, June 29, 2013

positive attitude

Today of all days I decide to blog. I am feeling irritated about things I wish I had more control of. Example my neighbors have a bush that is over grown into our driveway. He is trimming it but it doesn't help that even when he trims it the bush still scratches the heck out of our cars and we have a hard time getting in and out of the cars. Yes we asked to cut down but hey whatcha gonna do? Just very irritating. And the other neighbor leaves a dog out all night and its barking all night. Grrr! Some things are beyond my control much like this disease. Being a prisoner in my own body. This past week I had a scare that embarrassed me but I'm sharing this because people need to understand what ALS is like. This past week John and I were eating dinner and I had chicken salad with grapes, apples, celery and pecans. It tasted great except when eating part of a very tiny piece of nut was in my throat causing me not to be able to breathe. Matter of fact I was gasping and not to mention panicing. John was trying to calm me down and stood me up. After I was ok I told John with tears that I had peed my pants. He cleaned me up and wiped my tears hugging me and said its ok and said he was expecting more than just pee. Bottom line is, is that we haven't begun the hard part of this disease yet. John has quit his job to stay home with me. Many people would say why would you do something like that. The answer is because we can't afford home health care and the biggest reason is not to many people know how to handle me. I trust very few people. Many think I will break or they might hurt me. If I'm hurting I will let you know, trust me. Plus its very difficult to find someone honest and reliable that you and your family can trust. Having someone outside of family can be difficult and stressful if you're not comfortable with them. But seriously even though I'm a very positive person, like everyone else I am human and I have good and bad days. But I try hard not to allow the bad over power the good. Now I can say without a doubt I know that John will always be there for me. Even when I snap at him like I just did, regardless he is always by my side. Many times I know that he gets tired and wants time away and he of all people deserves that. But sometimes that does bother me because even though I understand I too would love to take a break from this disease. I deal with this disease 365 days a year 24/7. And to top it off to listen to other people complain about the aches and pains... Please. Not every day will be great but for me I have the ability to be able to change the way my day goes so that the bush isn't a problem I can have the cars parked differently and the barking dog is saying hey I'm here for you to come pet me and as for the nuts, i'll just stay away from. Now I can focus on whats important and that for me is being able to help others. Like I said before we haven't dealt with the difficult part of this disease yet. So in the mean time I can and will help whatever way possible for others to enjoy living life strong. Leave it to John to say you should blog. Because now the irritation is gone. I can focus on the upcoming week and not be bitchy to anyone. Hmmm.. He knows me so very well! Between John, the kids and grand babies and family I have a great life. John does almost anything for me and he loves me. To have been married almost 13 years, you would think we just got married. And you know what I'd marry him all over again and again. This disease has brought us so very much closer in many ways. We've always loved each other but now its a greater love, greater passion and yes even a greater trust for each other. So my bad days never really last to long because I have more reason to be positive than negative. So find your reason to be positive and live life strong and Never give up.

2 comments:

  1. Robin ... We understand. We are dealing with ALS plus "life" also. If you haven't done so, please please come visit our website about Chip's journey with ALS ... He is doing amazingly well. And now his friend Joe, who is on the same protocol, is also doing so much better. Don't hesitate to contact us. Hugs and warm regards,
    Pat, a.k.a. Chip's mom.
    www.Chips-ALS-Conquest.com

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  2. Contrary to what most people have been told, there are a few of people who have healed from ALS. There stories can be found at www.HealingALS.org and should be shared with others who have been diagnosed with ALS, so they too can have a chance to heal their bodies of this potentially deadly disease. Please help raise awareness by visiting www.HealingALS.org and sharing the news about these amazing individuals with others in your social media networks and email contacts. Please help us help others around the world who have been diagnosed with ALS. Your help is needed to spread the word. Thank You

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