Tuesday, August 21, 2012

I am still ME!

Over the past few months I have many things going on that many would think no big deal. But to me it was something that had consumed me to the point that at times I would cry for no real reason. Over the past few months I am seeing the progression of this disease affect voice and how I talk. Many times I will have to repeat myself and still will have someone say what I am saying for me. Talk about frustration... You would think I had a few to many. Lol In the early part of July I had a diaphragm pacer and feeding tube put in. Although everything went well I felt different and less attractive to my husband. Having wires and a tube coming out of me. I at times feel like an alien. Mentally it took a lot out of me. But that is where my family support came into play. With ALS family support is so very important. After my surgery my head was playing mind games and I really thought I was worthless. That is until my daughter talked to me and made me realize that I was feeling sorry for myself and at that point I turned myself around and realized that I still have a ton to offer and even though I have a tube and wires coming out of me it doesn't change who I am and how important it is to help others out dealing with this disease. Lets face it and be honest to ourselves... Life isn't always gonna be easy or fair. But it doesn't allow us to pity ourselves. In life we learn as children to get back up after falling and start back over. As adults sometimes we forget what we learned as kids. To me it is what I have learned as a child and from others that it is clearly ok to fall. But I also feel you better get back up and if you need help its ok to ask. I was very head strong before this disease. Now having to depend on others for my wants and needs, I have to put that pride aside and accept the help. At times its humiliating and embarrassing and at times it can be funny. Laughing at yourself depending on the situation can be a good thing. I now look at me living with ALS the new normal life. Life has its challenges and its up to us to learn how to accept and overcome those road blocks in life. As I have said to many people that for me in a weird way that having ALS is a blessing. What I mean by that is that having this disease made me slow down and appreciate what I have and what life is about. Before this disease I was all about what I can do. Now I live thinking what Can I do to help others and think less about myself. Its amazes me at how you can achieve so much when you set your selfishness aside and do for others. Even though I never considered myself selfish before I still had an presence about me that when I look back and think wow I was like that and I am so glad that I have changed the way I think and do things. This disease can be and is hell but seeing what I see and doing what I do has made it much easier to deal with. Having this disease has made me live life and it has brought me very special and beautiful people into my life. So when you look at me I won't feel like an alien. Regardless of the wires and tube... I am still ME! Remember never give up and remember you always have someone to lift you up when you're down


  1. Enjoyed reading your post. Love your great attitude:) ~ Judy

  2. There is a fantastic Josh Groban song, "You're Still You". I think of my dad every time I play it :) God Bless you and your family.