New Beginnings

I have always loved New Beginnings and fresh starts! The first day of the year, month, week, birthdays, etc. It is a time for new goals and renewed determination! It is a time to do and become anything you want! It makes me have hope and makes my soul come alive at the possibilities!

I have always searched for a life with passion and meaning. Although I have always been very passionate about my family, friends and people in general, it wasn't really my passion in life. I have always searched for more and still am. I long for more meaning in my life, to feel better about my self and to have a since of joy and peace.

I love being a mom and I get a lot of joy from it but it feels like I could always be doing more and doing it better. I am constantly asking advice and reading books to try improve and become an even better mom. Sometimes I feel like Tripp deserves a much better mom than me but I strive to do right by him. I am always striving to become a better person in general. I want to do more for others, to leave a legacy that is good and honorable, to make a difference in people's life.

As the New Year comes I feel like I can finally get myself and my life to a place where I want it. I have a lot of things I want to work on this new year and to be honest I need some accountability to start off on the right track. That is why I decided to track my progress here. So here are my goals for the new year!

     I have gained around 70lbs over the last 5 years between pregnancy, inactivity, medicines and my eating choices. I hope to not just lose weight but become a healthy person. I want to eat more fruits and vegetables and to cut out junk food or non healthy eating.

     I want to cut out soda drinks all together.

     I want to increase my daily water intake.
    
     I have severe physical disabilities from pain and fatigue but I want to try to be as active as I can. I really enjoy doing water exercise classes so I want to try to do at least 2 a week.

     I also want to start trying to walk as much as possible. Of course I know with my health problems some days all activity will be impossible but on the days that I can I need to take advantage of it.

     I want to start trying to do some yoga and stretching every week.

     I want to try to do some sort of meditation every day. This is really just to take some time to be still and quiet and listen to my body.

     I want to continue to try to become a better mom. Try to read one book every 2 months on parenting to try increase my patience and knowledge. Patience is a big issue with me, always has been but I really want to work on this where Tripp is concerned.

     I want to continue to read 1 book a month that helps me to continue to grow as a person and as a wife. I want to strive to develop a even more powerful and committed marriage.

     I want to continue to tune in to my spiritual self. Develop a more meaningful relationship with God and to teach Tripp to do the same.

     I want to work on appreciating all of the beautiful and wonderful things in my life instead of dwelling on the pain or negative things I deal with.

Well these are just a few of the things I want to work on. As you can tell I really just want to become a better person, healthier, more spiritual, happier and a better friend, wife and mom. I will continue to at least a weekly post to track my progress and hopefully at the end of the year I will see a new person in the mirror.

Thank you for supporting me on my journey and for all of your encouragement. Here is to the long road ahead!

    
Jen

The Story of Us

I am a parent but not just like everyone else! I am different; I have disabilities or limitations as I prefer to call them. That changes things not only for me but also my husband and child. I fight daily to keep the independence that is so very precious to me. I have worked hard my whole life and have always been independent and somewhat rebellious even stubborn some would say. But I have always had to fight and have always considered myself a strong willed person. Getting diagnosed at such a young age with MS would definitely cause some to take a step back but not me, I never missed a beat. I just always knew that I would be ok, that I would prove the doctors wrong. They told me I would be completely disabled and dependent on others by the time I was 30, that I would never hold a job, that I would never be able to have a family! For the most part I accomplished everything they told me I would never do. Not to say that it has been easy! It has been a hard road and I have had a lot of setbacks by I did it! There was a lot of days that I didn't think I would overcome it but I was determined to the core. But this illness has not been that simple. I’m talking about my arthritis, Ankolysing Spondylitis. It has proved to me that I am nowhere near as strong as I thought I was. This disease has really thrown me for a loop. It is not something that I can push through or ignore very easily. The pain that comes from this disease is intense and something I was totally unprepared for! The physical disabilities associated with AS is something I understand and could handle although it was hard. But the pain changes you, changes your personality and outlook on life. The problem is that there is no cure so without a doubt I know it will only get worse and due to the aggressiveness of my cause it will probably happen quickly. This is something I still find very hard to accept. I tell you all of this to not make you feel sorry for me. I hate pity but to help you understand the facts. Tripp is a very bright little boy but he has already been faced with things I had hoped he would not see until he was much older and able to understand better. He has seen many days at which I am unable to care for him, dress him, cook breakfast for him, bath him and put him to bed. There has been many times when he has wanted me to sit down and play with him and I physically can't. I have missed many activities because I was unable to leave my bed or couldn't be in the heat. We noticed when he was little he would grunt when he sat down and I finally figured out he was copying me. When I hurt it is hard for me to sit or get to a standing position after sitting for a while, so he had heard me make that noise. He thinks at times he needs a walking stick because he "falls" a lot! Lol Instead of me being with him in the living room he comes and sees me in my bed or calls to me from another room. These are all things I wish was different. For him it is the norm but I dread the day he realizes that not all moms are like me and he ask me why I can’t do the other things moms can do. I am supposed to be his hero, his protector but at times he takes care of me. Sunday was a particularly painful day. On the way from home I had hit my pain threshold and was in agony! I was covering my eyes and crying silently but every bump in the road would make me release an uncontrollable outcry from pain. I had my seat in the front laid all the way back and was just trying to make it home while Cliff drove. Tripp took my hand sweetly and rubbed his fingers softly on the top of my hand. Every time we hit a bump or train track he would ask "Mama are you ok?" It was so sweet and kind but part of me was saddened that he had to worry about me at all. He should not have to worry about me; I am supposed to worry about him. I worry about how this will shape him as a child, teenager and adult. Will he look back on his childhood with fond memories or with sadness? Will he be embarrassed by me as he gets older? He resent the responsibilities that he will have that other children might not? I hope he will be proud of me! I hope he will see how hard I try to make him happy and make great memories that will last a lifetime. I hope that I can show him that he can do anything he puts his mind too. I hope he will know that his laughter and smile is what kept me going. That my love for him drove be to be the best person I could be! Now let me say that I have every day struggles but they are nothing compared to what they would be without the love, friendship and support of my soul mate and husband. He is truly an incredible person! He is so kind and patient yet strong. He is my rock! He is such an amazing father. Not the biggest on discipline but is definitely his son's hero. He is always there to reassure me and make me smile when I need it or just a comforting hug when things are rough. He never complains or voices any regrets and always picks up the pieces when I am unable to do my part. He is the love of my life and I am blessed to have found him. Also I need to say that I know this may seem doom and gloom but it really is not, it’s just our life. It is the hand that we have been dealt and I am determined to prove not only to myself but to my son and everyone else that I can be the person I want to be even though I have physical limitations. I can accomplish anything I put my mind too. I will always strive to have a smile and a friendly disposition. I will always strive to show everyone love and kindness. And above all be someone my family and friends will be proud to know. I know this is a very personal story but it helps me to share, to put my feelings on paper. That way somewhere down the line when I am unable to voice my feelings or concerns or maybe not around, I have documented them somewhere. I hope my story gives someone else courage and determination to fight through whatever their difficulties may be but to ultamiately be a good person and have faith in yourself.

Trauma, Tragedy, Life Don't Mix Well with MS & AS!

First off let me say I know I should be grateful just for being alive and being with my friends and family. I know I should be positive and upbeat about all the good things in my life. If that is what you want to read about right now, then this post is not for you. But this is REAL! This is my reality for today and that is what I am going to write about!

Let me start with the trauma and tragedy that seems to have surrounded me the last few months. First and foremost was the passing of my beloved and dear Papa. He was 93 but it was a very young, independent and active 93. He and my Granny (who he had been married to for 73 years) still drove to town a couple of times a week. They lived alone except for their Jack Russel dog named Jessie. They were an amazing, loving couple. He died after a somewhat short sickness and to say that it devastated me is an understatement. I still wake almost every morning at 3 a.m., this is when I received the call that he had passed. He was a shining light in my life and I have not yet been able to figure out a way to cope with his loss. On top of that there has been several very sudden and horrific deaths of young people in our small South Georgia town. Just this past week a friend developed a massive brain bleed a week after giving birth to her second daughter. It is just heartbreaking. I find that I just can't seem to wrap my head around it all, it is completely overwhelming to me. How do I make sense of all this heartbreak? My heart breaks for these families. I just pray for them to find comfort and peace but at the same time I almost can't let myself feel the sorrow because I am afraid I will lose myself in it.

And if all of that was not enough, I have MS, AS and a handful of other health problems that affect me daily, hourly, even minute to minute! I was diagnosed in 1997 with MS and at the time I wasn't really fazed by it very much. I just thought I could fight it and that I would prove the doctors wrong. Well, for the most part I did. I had remained somewhat healthy for the last 13 years. I worked a full time job, was married, took care of my home and husband, went through a divorce, met my soul mate, got remarried, and then had a baby on the way. I did all of this on my own, fighting everyday for every ounce of independence and life. After my son was born in 2009 things changed. They changed dramatically and very fast! It was astonishing that all of the sudden I was fighting just to be able to take care of myself let alone my baby and it wasn't from my MS. I was diagnosed with AS on March 5, 2010 and that day forever changed my life. I finally knew what it was and I thought the same as I had about the MS, I can fight this. Boy was I unprepared for the future that lay in front of me. I did tons of research on AS and the more I knew, the more scared I got. I knew this disease was different. I felt completely out of control and never really feel like I have gotten a grip on it since. It wasn't so much the physical disabilities that scared me because I had already faced alot of that with the MS but it is the PAIN! I had always had a high pain tolerance or so I thought but the pain from this disease is at times unbearable, to say the least! Pain changes you, it makes you depressed, mean, irritated and bitter. I have turned into a different person and it is not a person I like! I use to take pride in the fact that I was a kind, loving person but now I have no choice but to second guess everything I ever knew about myself. I look in the mirror and I don't even recognize this person looking back at me both physically and emotionally. I was so completely unprepared for the mental and emotional changes that come with these diseases. I read not to long ago about a young woman in her 30's who had AS who had undoubtedly committed suicide and it hit me hard. I questioned my own sanity. I had to ask myself, would I ever get to that point? I whole heartily hope not but I would lying if I said that I don't sometimes wish to not wake up. I know that is terrible for a mother and wife to say but it is the truth. That is what chronic illness and chronic pain does to you. It makes you question whether you are a benefit to your family or a burden. I would like to think I am a benefit but some days it is hard to see the good past all the ugly. I just pray that as my son who is 2 1/2 now grows up to see me as a fighter, as a mom that loved him so much she was willing to conquer the worst just to be with him. A mother that despite all the negative things, sadness, pain, and tragedy she was able to pull through and be a loving, nurturing mom. I want him to see me as his mom, not his mom with problems! I have a wonderful amazing husband but I question everyday whether today will be the day it is too much for him to bear. It is a hard way to live. He gives me no reason to feel this way, he loves me and I know it. But I know how hard it can be to take care of someone who is always sick, it takes its toll on the person and the marriage.

So.... what is the point of all of this other than to just vent and tell my sob story???? I guess it is for me to realize I can be purposeful. I can make a difference in my son and husbands lives and maybe even someone else. That it is worth the fight, I am worth the fight. Today sucks but tomorrow may be better! On days like today and the last few days, I just need to take time to regroup and focus on the good and positive. Yet I know that there is many bad days ahead and I know that it will inevitably get worse, that's what these disease do! But I can get through one day at a time! It is ok to have days like today if I make the good days I have great!

Hoping for a Good Day

Today didn't start off good. Awoke at 3 A.M., my son woke up at 4 A.M. and stayed awake, thankfully my husband took over parenting duty and I stayed in bed til lunch. Having alot of leg pain from the MS and foot and hand pain from the AS. Took some pain meds and hoping for some relief soon. Planning to get out today and going to a friends house. It's strange I now plan my days around how much pain I am in, not around what I want to do. I pray for better days ahead!

Life is a Struggle!

The last year has been completely life changing! Not because I was diagnosed with MS, I have known that since 1997 but because I was diagnosed with AS. After I received the MS diagnosis I said to myself, " ok, this is my lot in life that I will have to cope with," boy was I wrong! The Ankylosing Spondylitis has forever changed me and my life! I have had problems on and off for years but after the birth of my son the AS kicked into high gear. It was horrible. It made me question whether I wanted to continue living in such horrible pain. But I endured and I am able to take some meds that help some. They at least make my day manageable but it is a struggle! Everyday I fight! I fight to be active, to care for my son, to be a good wife and to not let the pain turn me into a mean bitter person. So, here I am trying to make the best of what I have been dealt. I guess all I can say is Life is a Struggle!