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!
