Friday, November 19, 2010
A little over a year and a half ago I was diagnosed with ALS. Last year at this time I was still able to do many things. I could walk, got dressed by myself, put on my own makeup on, and feed myself along with many other things that were most of us take for granted on a daily basis. Today I sit here and it's a few days before Thanksgiving and I'm thinking to myself wow another goal I'll be achieving. I will still be able to enjoy a Thanksgiving dinner with my family. Throughout this past year to keep myself going I have created little goals. I say little goals but realistically they are huge goals for me. Along with the goals that I have created I have also completed a few my bucket list dreams. I have been able to do many things this year that only few people are able to do living a normal healthy life. I have had the opportunity to travel not many places but have been able to go places where many people only wish to have gone. I also met Donny Osmond and to sit and talk to him for a few minutes on along with his sister Marie. You oneness talk about being humble and down to earth those two are very humble and they don't let being a celebrity get in the way of that. I also had the honors of being able to skydive with some amazing people this year. Being able to share my bucket list dreams with my family and my ALS family has allowed me to stay strong and positive. Let's face it ALS sucks and if anyone tells you that ALS isn't painful think again. This disease for me has been painful in many ways physically, mentally and emotionally. Before I had ALS I was active and healthy and pretty fit. I could even out run my kids but today I depend on others to do things for me not because I want to but because I have to. This is where the emotional pain comes in, I was never one that wanted to depend on others and now I hate it. But what's more painful is watching my husband and kids deal with this. Seeing the frustration and pain in my husband eyes when he comes home to find me in the middle of what I call a boo-hoo moment or if the dinner he cooks doesn't turn out right. My husband is my angel there is nothing that he wouldn't do for me. They say ALS shows no mercy, I have to agree. ALS does not discriminate it not only affects the patient but it affects all of the love ones. This is why I find it very very important to myself to believe. Believing in your dreams, believing in yourself, believing in your God, believing things happen for a reason but most important no matter how hard things get believe that you do matter and people do love you no matter what. So when you're having a boo-hoo moment think about what you've achieved and believe in yourself because if you don't know one else will.
Friday, September 3, 2010
Today I sit here thinking about my disease wishing I could be normal again and knowing that will never happen. A part of me wants to cry but then I look at those who are much further on than I am. How dare I feel sorry for myself. I cannot do many things such as feeding myself and bathing and walking is very limited. I can go on with other things to but I think and feel God has a plan for me. Having ALS has allowed me to see/do and appreciate so much that is taken for granted, for me it opened my eyes to help others in a way others may not be able too. It frustrates me that many people do not know what ALS is. That is why I am making it my mission to raise awareness to this disease. Many people that I say I am inspiring and say I am a strong person. The fact is I am tired of people suffering from this torturous disease as it takes your ability away to live. So NO I am not as strong or inspiring as thought. I look at myself as a person just wanting and needing to help others and to give a person a smile that they can hold onto within them. It doesn't matter who you are, everyone deserves a smile. What puts a smile on my face my grand babies, husband and kids, my family and friends. Of course you know I would say that. But achieving some things on my bucketlist has been nothing less than amazing and the best part is my family sharing in my experience and dreams that came true. Last week my husband and I along with my brother and sister went to see Donny and Marie Osmond. (great concert) but to my surprise my sister and sister in-law pulled strings for my husband and I to meet them after the concert. I balded and cried in happiness, let's face it I have been a HUGE Donny fan for 41yrs. and talking to him about ALS and him supporting the cause was AMAZING. How they pulled it off is beyond me and thank you's don't seem enough considering I have been blessed in so many ways. That is why I am doing what I can to raise awareness. Dream do come true if you BELIEVE in yourself and accept support from those that love you most.
Sunday, July 18, 2010
Ok a lot has happened since my last blog. But one thing comes to my mind and that's PAY IT FORWARD. Over the Christmas holidays after being diagnosed with ALS - John and I received a gift to go to Maui HI. This is something I have always wanted to do and was on my Bucket list. I had a very hard time wanting to accept this gift (lets face it, it's a very generous gift) especially from a person I met just last summer (who is an ANGEL to my family and even more so to me). So with agreeing to accept this gift I made the promise to pay it forward (by the way...This trip was a dream come true). But how could I pay it forward? I'm not rich financially, so what could I do to pay it forward? With ALS not being able to speak is one of the effects this disease causes to many who are suffering. I thought I could use my voice to speak for those who can't. So I have kept my promise to pay it forward. I went to Washington D.C. and was able to meet and speak to many people. Since this promise I have done speaking engagements and have been trying to keep positive. Having ALS is not fun and at times this disease is very painful physically and emotionally. But what gets me through the day... is the many others who are much worse than me and they are keeping strong. I have an amazing family that supports me so why cry. This disease has taken much from me but it also makes me appreciate what I have even more and it makes me want to pay it forward. That is why I continue to do what I promised. So while you read this think of what you can do to pay it forward. It can be as simple as smiling, you never know what others are going through. You could just be that person that makes a person smile,laugh or even better want to live. I have had many great things come my way and in return I promise to continue to do what I am doing without expecting anything in return and I hope that others will follow.
Wednesday, May 26, 2010
Before I was diagnosed with ALS things were coming together for me. I was enjoying life, I was running five miles everyday and working out regular. I also was coaching special Olympics power lifting. With that I too was also benching 190lbs. for a competition coaches vs. team. Until I noticed some twitching that wouldn't stop so long story... but after several testings of MRI's, blood work, EMG's ( that were very painful ) and spinal tap along with many other testings and doctor visits I was told that I have ALS. All I thought about was my husband and kids without me. I don't want to die. For some reason it was easy for me to tell my family I have ALS, I am not sure why that was. My husband and kids have all supported me and they continue support and help me. I can no longer run and walk with assistance. My husband helps bathe me and getting me dressed. I still at times get so frustrated but then I think of others who are much worse and cannot do anything. I hate not being normal and having others do things for me. But something great came out of all of this, I realized even though I have a fatal disease I can either choose to sit back and let this disease destroy me or I can do something about it and fight it to the bitter end. I chose to be strong and do something about it. Just because I have ALS it doesn't mean I have to live like I have ALS. My life has changed in many ways both good and bad. But the good over takes the bad. We all take many things for granted especially the simple things in life. ALS is taking all of that away from me slowly except my love and my feelings. Just appreciate what you have and who loves you each day as it can be taken away in a split second.