Friday, November 1, 2013
Well today is already November and we just began our journey across America for ALS for the second year. If you would have told me 5years ago I would be doing this I probably thought you were crazy. This disease has allowed me to share and be able to help so many people out. And yet as much as each one of us dealing with this disease fights and continue to raise ALS Awareness you would think that we would have a cure. Unfortunately we don't and further more we don't even have effective treatment. We could sit back and accept that and just wait to die. But for many of us that isn't and will never be an option. Since being diagnosed with this disease, I have learned to accept that I will never walk again, I will never be able to sing like I use too and I will never be able to just pick up my grand children to play with them or even give them squeeze tight hugs. But what I will never accept is that this disease continues to destroy many other lives from both the very young to the old. Remember this disease doesn't discriminate. This disease shows absolutely no mercy. And I can't and won't allow myself to let this disease get its hands on anyone else without a fight. Would you allow yourself to let someone hurt anyone in your family? Well this disease is very much like that. I need to protect my family from this. That is why I do what I do and why I go to great lengths for attention. It isn't because I want attention. Its because this disease needs attention. We need not just a cure. We need something so this disease can never take another person's life. We become a prisoner in our very own body. Besides my family, this has become my passion and my purpose in life. I breathe this finding effective treatment and a cure 24/7. Many of you who knows me understand why. But who really understands is my husband. He not only has to deal with me but he has suffered greatly even more so than me. Dealing with ALS is not easy and then you add in children regardless of their ages and the day to day stress and lets not forget the care giving he deals with solely on his own. Many of you are probably saying well you must be doing well because you travel so much. Here is the deal, one I feel better traveling than I do just sitting at home. Two - Soon I won't be able to travel and could be bed ridden..Three - This is how We are dealing with this disease. Many say its expensive and many couldn't do this. Well bottom line is if you were dying would you just sit and do nothing or would you want to get out and live life? I don't apologize for being blunt or matter of fact but anyone who wants to complain about me can really just kiss MY ASS. I have no time for negativity or for the woes me attitude. John and I have dealt with this disease almost 5 years and we haven't yet hit the hardest part. But when we do I can guarantee one thing, we will get through it. Because we have faith, hope and tons of love. Remember no one said life is easy. It is what you make it and I'm living life strong and refuse to give up. Do me a favor... Some time when you're alone think about your life and see what you want to do to make life happier for you. What would you change and what you can do to help others. I guarantee you will feel better. Don't take the easy way out. Life is a challenge so live each and every day strong and never give up.
Sunday, September 8, 2013
Saturday, June 29, 2013
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.
Thursday, April 11, 2013
Four years ago about this time I was just starting a series of tests on me to determine what was going on with me. Let me back track a little bit for you to understand what I was doing. Each day I'd get up and go to work at the Hylant group then after work I would go to my other job at the YMCA. I was a fitness coach and also coached the special Olympics power lifting team. I can't really call that work because I always had way to much fun with those guys. The special Olympics team were training for a competition, the coaches against the team. We had four events bikes, running and then benching and the dead lift. As my boys would say I'm pretty tough for being a girl. I would work out and hackle right along with them. Even though you can see that they have special needs, they were treated normal. They didn't want to be treated as if they were different. The only thing between them and us the coaches were that we told them how to do things but they are the HEROS. They taught us to BELIEVE. Imagine going through life knowing your different and people picking on you and calling you names. These boys deal with that but yet they believe in themselves and they don't allow others to bring them down. after each practice we would huddle together in a group and put our hand in the center and on the count of three we would say /YELL BELIEVE. One day I noticed some twitching in my left hand that wouldn't stop. I thought it was from training with the boys or the training for the marathon I was doing either way I figure it was too much and went to see my doctor. She immediately sent me to get some testing done thinking I may have had a stroke. Then after that she sent me to another doctor. She was concerned and felt the neurologist would be the route to go. Long story short after all tests were complete mind you some were very painful that I have ALS. This was in September of 09. in May of that year I asked the doctor if I had ALS. Although he wouldn't say yes and he didn't say no I knew in my heart and gut I did. After finding out John and I both cried. I feared that I wouldn't watch my baby girl graduate from High school. I feared not being able to see my kids get married and have children. I feared that I would be forgotten and that John would fall in love with someone else and forget what we have/had. I worried for Chase, even though he is not mine biologically I still look at him as my son. How would you feel knowing that you are going to die more sooner than later? I have to be honest it scares me to no end. But then a light clicked on and I realized that I can take that attitude and die or I can start living my new life. I choose to live life strong and with a positive attitude. Not everything goes the way I want things to but I choose not to stress out. Just recently John and I made the decision for him to quit his job to stay home with me. We are not wealthy and we have bills like everyone else. This decision that John had is very difficult because he couldn't go to work to get away for he would worry about how I am doing that much more and we couldn't afford to have someone here every day. So this was the best decision for us. Financially we will see but do we have regrets about this? The answer is NO. We have come a long way from the uncertainties of this disease to accepting and living each day as its our last. Having ALS has allowed me to not only let go of the little things but its allowed me to see who I really am and to keep living life in a positive way with a positive attitude. The day you can really look at yourself in the mirror and say I love what I am doing without getting any financial gain then you will understand what I feel everyday. My gain is to live each day to my fullest, live not in fear of being forgotten but to live knowing that I can love and knowing that I am loved. Also believing in myself the way my team has taught me to do and finally to live life strong knowing that you can't change everyone but knowing that if you can help just one person you have done so much more that others only wish they would do. Don't look back at what you could of or should of done. Look forward to your will do and can do's. I guarantee that you will see a happier you. Live life strong and Never give up!
Sunday, April 7, 2013
Sitting in my chair enjoying the peaceful quiet morning with the window open and the breeze coming in. I muted the music from the television just to enjoy this quiet time. How often do you have a quiet time? I am certain that most people don't take advantage of it. If you had down time what would you do with yourself and would you force yourself to sit still or relax? I ask this because we all get wrapped up doing so much that we tend to forget about sitting back and looking at what we have accomplished and enjoying the little things. With ALS you are forced to slow down. You don't have a choice but you do have a choice of how you react. With having ALS I have realized that most of what I do is all ALS related. I didn't think so at first but my daughter pointed out to me that everything I do revolves around ALS. After a few other things that I found out, I realized that she is right. No matter what your situation is, remember that you really need to take that break and really appreciate everything that you have. However it doesn't mean that you forget about what you're doing and give up. I realize that I am thinking constantly of how to raise Awareness and to a degree I can be obsessed and my excuse each and every time is that I need and have to do this because I am trying to find that cure so that you and your children will never have to go through what I and many others are dealing with now. I applaud my daughter, she is right. Not everything revolves around this disease. She just wants normal conversation. Please don't think that she is being selfish. She wants and needs her Mom to be there for her. ALS is and always will be a cruel disease but I for one will not allow this disease take away from me what is most important. The cruel part about ALS isn't the dying... Its how we deal with the suffering and pain and being that prisoner in our own body. The pain is knowing how you could do something and realizing that you are no longer able to. But does that give you a reason to give up? I say absolutely not. I say that you look back at who you were, and look at yourself now. I am certain that there are many things you could do then that maybe you haven't done in quite some time. So when you try to do it you just may have to do it differently. That is exactly what I do. Impossible, can't, i don't think so are things that things that I try my very best not to say. I have always taught my kids never to give up and to always face your problems head on. Well with ALS I am doing just that. The struggles in life maybe more difficult than others but remember after they pass, you can look back and be proud of how you handled it and also share and listen to how your kids are handling situations. You just might realize that the apples doesn't really fall far from the tree and maybe you just might learn a thing or two from your children. Life is so very beautiful and so very precious. Take time to really appreciate what you have and how you share yourself with others. Not everything deals around a situation. So find ways to enjoy life and live your life strong and never give up.
Thursday, March 21, 2013
As we go through life we see changes all around us. Sometimes we don't notice them and others we do. Just like the weather we expect the changes. If you think about it life would be very boring if their were no change. Everyone would be doing the same thing and we wouldn't be here. With ALS I/we my family and I have had to deal with changes that ALS has caused. I was one that was always on the go and always busy. Well this disease has caused me to slow down. That is a change that was well needed. Look around you and really look and ask yourself and please be honest, are you happy? I bet most of you will say yes. But now pretend that you have no use of your body and you now have to depend on others for your every day needs. As you watch the changes around you what would your answer be? Lets face it change is and always will be around us whether you like it or not. Life is all about change and it is up to us to make sure to use that to our fullest. I have ALS and I hate it but I love what it has done for me mentally and spiritually. It has allowed me to open my eyes and take it all in like a sponge of what my life is really about. I love the fact that I can appreciate the simple things that we do daily. Laughing, hugging and even the simple saying I love you is more greater than you can ever imagine. Just think I would never have found out what I am going through if it wasn't for change. Now I'm not saying all change is good. But what I am saying is this... Allow yourself to be open minded and allow yourself to accept the simple things that life has to offer. If not only you will be stuck in a bottle with it sealed and never knowing what you are missing out on. Life is so very precious and such a beautiful gift to be wasted away because you fear change. So go out and really look at your life and see what you can offer to those who need and want to live life to their fullest. I bet that you will like the changes that you had bottled up that you never knew what to do with or that you never knew you had. So I'll end here with... Live your life strong and Never Give UP!
Wednesday, March 13, 2013
As you look out your window you can see the changes in the weather. But you can not tell how warm or cold it is unless you go outside. Well ALS is kind of like that. If someone was to look at me, I seem to be normal like everyone else. But when I speak or need something done you can clearly see that I have something wrong. ALS has many different stages of this disease much like the changes of the weather. It can be sunny and warm one day and freezing cold with snow the next. With ALS you can be doing great one day and the next day you are having issues with breathing, or your speech is so very difficult for others to understand. Over the past few weeks I have noticed that my speech is difficult for others to understand and at times, many times John or Brittany will have to translate what I am saying. I also have noticed that my legs are so very much weaker. I use to be able to walk with John behind me holding me up while I walk but now even that is getting more and more difficult. Does that bother me? Yes but I am not able to do anything about it. I look at it as part of the ALS journey that I am on. I often wonder what will be next to go. But I don't dwell on this or allow it to bring me down. ALS has so many complex components about it to where it is almost impossible to determine where the disease will hit next. Or even who it will hit. I know that I am a strong person with a great attitude. But that doesn't mean that I'm invisible. It just means that I have accepted that I have an incurable disease. However even though this disease is terminal, I am still living and doing my best to help others dealing with ALS. So when I look out the window I don't look at the weather, I look and think of what I can do to help others. There is this saying "Never judge a book by its cover." So why should you? We can do anything if you really set your mind to it. Don't allow this disease take your ability of living life away. Don't allow the weather get in the way of you going out to explore your endless dreams and goals. ALS might be this horrific disease that is so cruel but you can fight back and live, love and and do the things that you enjoy. This disease can't take away your memories so quit looking out the window and take action for not only you but for your loved ones. Live your life strong and Never give up!
Thursday, February 21, 2013
I can give you the exact name and its description of ALS. But you would have absolutely no clue what an ALS patient goes through. Even with this said you won't completely understand unless you go through it yourself. So today I am going to share what I am dealing with for just today. This morning I woke up at 9:30 but since I have been having severe muscle spasms and restless legs at night I needed to sleep a bit longer. I assume its because my legs are getting much weaker. I can barely walk even with John's help. But I try to every single day. John will ask do I need the chair? And I will say no I have to and need to move my legs. But with not sleeping at night for a few nights and now unable to even nap it makes for a rough day. With ALS we tend to get muscle spasms. Your muscles cramping up into knots. You know how a muscle spasm feels... Now magnify 10x's the pain. But remember that pain is not localized. With ALS you have muscle spasms and twitching all over your body. People will have all kinds of remedies that do work temporarily and it doesn't stop the twitching. Doctors have medication and that doesn't seem to help unless I take more medication. So today I had John call to see what we can do and I will try a new med. tonight and see how that works. Now I've touched on that, so many other things to touch on... With ALS you have to depend on others for everything. Showering, feeding, dressing and even scratching that itch on your nose. The feeding I am ok with at home, I am very uncomfortable to have others watch me eat. I have difficulties chewing without being rude. No graceful way of eating. I need to be very careful of what I eat for fear of choking. Even though I have a feeding tube, I just use that for water. Having ALS there is no doing anything fast We have adjusted our lives around this disease. Now don't get me wrong, I am a positive person with a great attitude. But even the best has down days and that is ok. We need those days with or without ALS. It allows us to keep grounded and to appreciate the things that we have in life. ALS is a terminal disease but that doesn't give me the right to give up or give into this killer. I have great quality care and a great life. I must admit, I have a great husband and family that supports and stands by me every single day. But as great as that is I still tend at times to feel as though this disease has a tight hold on me. But what this disease doesn't have,is my ability, willpower and determination to fight this disease head on. Regardless of the the pain and tears I deal with, it will never ever have a complete hold of me and my ability to stay and live my life strong. So regardless of your situation, being positive and a great attitude, you can get through anything life throws at you. Always remember that it is ok to shed some tears. by doing that it allows you to see a clear picture of what you need to do and those tears that run down your face. They will make you stronger. Just don't let it take control of your ability to live your life. Live life strong and Never give up
Thursday, February 7, 2013
As I sit here blinking at my computer going through pictures of my ALS family it amazes me at the strength that you have when dealt with a terminal illness /disease. I was very active before ALS took the strength out of my legs and upper body. Running for me was something I loved doing, the farther I would run the greater I felt. You can say that I most definitely had a runners high. For me sitting still was never an option by choice. I absolutely loved working out and almost every day you would find me at the gym, helping others or working on Me. You would think that is awesome and yes it was. I could and would bench press with the big guys lifting 190lbs. Although that all sounds great,and then it was all taken away in a flash. Because I was diagnosed with a disease that many will die from within 2 to 5 years after being diagnosed. At one time ALS was known as a tall old man's disease. Well I am not tall, I'm 5'2 and eyes of blue. I am certainly not old unless you ask my grand babies and the last time I looked I still have female body parts so I am clearly not a male. Point being anyone at any age can get this disease. Many times when John and I go somewhere people will ask a question about me to him, and many times he will say ask her. People who have ALS are aware of what is going on. We are of sound mind. But what really amazes me is that this disease as long as its been around we are still searching for effective treatment and a cure. So my mission is to help raise ALS Awareness to everyone possible. Now those of you that know me know what I am capable of doing. But in this case I need /want your help. Many of you know how positive I am so this may have you think twice but be assured that even though I am being realistic I will always be positive. This disease will take my life, this disease has and continues to make me become a prisoner in my own body. This disease takes every bit of energy from me regardless of what I am doing. This disease that I and many others have is a killer. But even though this disease that is so horrific also has a plus to it. The people I meet and talk to who deal with this disease are nothing less than amazing. The courage and willpower is extrodinary beyond words. When I see my family they tell me how they couldn't do what I do. If they had to deal with any life threatening disease, they would because of our family strength and support. The bottom line is yes you could and yes you would if you were forced too. Life isn't always fair, life isn't always going to be easy. But life is about choice and how you are going to decide to live it. We all will die but how will you want others to remember you and what mark will you have left so others can Learn? The choices and faith that you carry within you makes who you are. So why allow ALS or any disease stop you from living. As I have always said "I am living with ALS... Not Dying!" So live your life strong and never give up!
Friday, January 11, 2013
Well its the beginning of a new year and many people have broken goals and resolutions. As I sit here in my chair I wonder what would I be like if I was normal without having ALS. What would my concerns be and how would I be with others. I find myself doing more of what I feel I have to do and want to do in life. Not everyone is lucky enough to know what they are set out to do. Not everyone is lucky enough to do what they want. For me I had absolutely no clue of what I wanted in life before I was diagnosed with ALS. Even after it still took sometime to figure me out. Being diagnosed with a life threatening disease has a way of waking you up and smacking you in the face with reality. You know that you now have something that will not go away. So you have two choices deal with it and move on or pity and feel sorry for yourself and die before your time because you won't allow yourself to be happy. Seriously this happens but it will not happen for me. I know what I want and to do in this life. Yes it sucks having ALS is the way to find out my calling in life but at least I found out. Many people say I'm always smiling and maybe not facing this disease and that I'm in denial. Really if that was the case I wouldn't be doing what I do to help others. This disease isn't something that you can just ignore. This disease takes your ability to a whole new level of being a prisoner within your own body. Imagine yourself sitting for hours not moving, imagine not being able to talk or others not understanding you because your voice is affected by this disease. Imagine yourself sitting and watching others eat knowing you would love to join them. But you can't because you have a tube that you get fed from and knowing you will never taste the turkey from Thanksgiving or that hot dog with everything or even the pizza on a Friday night. But you can guarantee that you will get some sort of liquid for dinner. Yum!!!! Well have I made you think yet? Well if not here is another fact and yes it is personal so imagine yourself a lady having monthly periods, who takes care of that because you can't use your hands. Now that same issue, do you realize how embarrassing it is that you can no longer take care of your own self and others you depend on. Well lets be real many deal with this daily including myself but I'm lucky enough to have someone that cares and takes great care of me. Imagine if I had no one. Yes there are many people dealing with ALS that has not one person to help them. So when you see or here of someone who has a debilitating disease say to yourself how can I help them. I often think to myself if it was John and not me, would it be the same? I would love to think yes but one never will know until you are put into that situation. So now I ask am I in denial... Hell no! I am realistic and have come to terms with ALS. But I don't have to pity myself and think I'm dying every day. We all are going to at some point. I am lucky enough to do what I am able to do before that happens. So I encourage everyone of you to do a reality check on yourself and really put thought into it, ask yourself if what you are doing makes you and others happy, are you making a difference? What am I able to change or do to make my mark? Think about this and do something, because life goes on with or without you. Its up to you to make your mark. So live life strong and Never give up!