Sunday, February 26, 2012
Last night was a very emotional night for me as well as my husband. I am usually a very positive person but every now and then I to have my moments to where this disease gets the best of me for no reason. John and I were talking about the good ole times with our friends and then it hit me that many of them know I have ALS but haven't seen me to see how this disease progressed. This disease does not able me to do things that I could do before. Before we had this disease I could do my hair and put on my makeup. Now if we go out makeup and hair isn't an option. Oh I guess John could put it on but lets face it, he is a guy that doesn't know much about the girl things although he tries and does well. What I am getting at is with this disease I don't feel very pretty or attractive. This disease plays tricks on your brain and makes you feel less of a person than you already are. As a person you want to feel good about yourself physically, mentally and yes spiritually. Sometimes this disease makes you feel like you are worthless physically, mentally. You have to sit back and take time out and look at what you do have and really appreciate what life brings. You also should take time and really look at yourself and think of the positives. No one said having ALS would be fun or that you would be beautiful every day. Life in general never said that either. So why do I feel this way at times? It's the brain playing mind games with your emotions. Here is how I/we handle this. Share your feelings and be honest. Think of the positive things in your life and focus on what you can do and not on what you are no longer able to do. Focusing on the positives will allow you and your partner/spouse to work and get through the tougher times. Also communication and trust is very important in all relationships but when you add in the mix a disease it is more important to keep communication and trust going. Last night my husband reminded me that he is in this marriage and even though my face was covered with tears and many shades of red. He loves me no matter what and will be with me through the great times and the tougher times ahead. So when you're down remember you are in control of you. You may have ALS but as long as you keep positive you will never allow ALS to take control of you. So look at yourself and know that you are beautiful.
Sunday, February 19, 2012
So I am normally blogging about what I as an ALS patient goes through. I feel it is equally if not more important what the caregiver goes through. My caregivers are my husband, daughter. I want you to be able to understand the importance of respite care. As many of you know I have to depend on others 100% of my daily needs but What happens when they are sick or unable to care for me. what happens is they still do it and without complaining. But as a caregiver they need breaks and time for them. It's not that they love me less. They need it to take care of them. I am not very difficult but imagine you taking care of a child getting them ready as well. But a child is smaller and the needs aren't as demanding. You tend with feeding and the medication. Not to mention the worries they have when they notice things changing and the disease progressing. I don't complain at least I try not too. The caregiver not only deals with the person affected by the disease. They deal with the household needs and the children and the financial needs for everything and everyone. Not to mention the up keep of the house. The caregiver never feels that they can just go do what they want without the worries they have about everything else. I did help care for my mom when she was sick however I don't know what my family goes through. I do know that they need and deserves much needed respite care. In order for the person who is affected to get good quality care the caregiver and children need and deserves frequent breaks and acknowledge that what they do is very appreciated. Respite care isn't just for the patient, respite care is for the family who deals with the daily needs and stress that is cause by handling the daily struggles and the stress of the changes of the unknown and the worries that that need to be there. Please note this is my perspective on what I see with my care giving. Each person is different and what I see and share is just a tiny glance into my caregiver experience. Lets face it the caregiver's job never ends, even at night when I'm sleeping John will sleep but he still wakes up to make sure I am breathing or to cover me up. A caregiver doesn't have a job that ends at a certain time because it doesn't end. As for kids well lets just say that it's not easy for them. My daughter comes and gets me out of bed every day and gets me my am medication and breakfast and lunch. She also takes me to my appointments. I also have my son that lives out of state. Just because he is out of state makes it easy for him think again. He worries that he can't be here and wants to help out every way possible. Then I have two that are still in school and to think this doesn't affect them. It does! They all worry and they equally share the stress of a parent with a fatal disease. Caregivers and children need and deserve much needed time away and not think about the disease. Even though I don't get that break, I don't deal with what they deal with daily. Just remember the caregivers need to take breaks and time for them in order to care for you. They also need to know that they are appreciated and what they are doing means something to you. They to are dealing with the sickness and they to have feelings and need support.
Wednesday, February 8, 2012
Your voice what does it sound like to you? Or how your voice affects others? I want to share with you my experience with dealing with this disease. Imagine yourself doing something that you absolutely love doing and one day you find that what you love doing you can no longer do. Well I grew up in a house with a large family and loving to sing. I started when I was young then as I became older in my preteens I was able to listen to my cousin sing and from that point I wanted to be just like her. She sang like an angel. Well a few years later she got me a job where she worked at a dinner theater. I would sneak out and watched her perform and really thought to myself how I wish I could be like her. So after tossing it around I set up an audition and almost canceled it. Joane would hear me practicing and somehow not sure how she knew I was chickening out but she pulled me aside and talked to me and encouraged me to do what I absolutely loved doing. Her words of encouragement follows me to this day. I could have easily have given up but she told me to follow my dreams because I am the one in control. Now I use her words she gave me because with having ALS it has affected my voice and yes it hurts that when I sing I sound not very pleasing to the ears. However I will continue to sing because I can and one day I might not be able to speak so I will use it as long as I can. With ALS you learn to appreciate what life gives you. I now use my voice in a different way. When I speak I speak for those who are unable to speak for themselves. I recorded for my kids and grand babies before my voice became affected. You can go to Youtube and type in my name If you listen to it, All I am going to ask is that you appreciate everything in life and if you love doing something follow your dreams because you are the only one that can make it happen. Thank you so much Joane for believing in me. I am following my dreams and I now soaring!!!