Wednesday, January 9, 2013
2013, with a BANG!
So my year is over of trying to find myself, figure out my future, graduate from college and find the love of my life. Check Check Check... Or so I thought. All the above have happened, but now it's down to the wire. I run out of my insurance in March, so what does this mean for me and my gene status? It means I will be finding out whether I have HD or not before my 23rd birthday.
Am I afraid? Of course I am. Does anyone usually want to find out what they are eventually going to die from, probably not. I argued with Mike, the love of my life, last night at dinner. He said anything could be passed on, that it's possible to get anything. Which I am quite aware of, but then the ugliest sentence that has ever passed my lips was spoken, I told him I'd rather have cancer. I think I'd rather be given the shot to be able to put up the fight. I want to option to fight the disease I may or may not have rather than succumb to it.
I know I always said I would never fall in love, get married, or even ever think about having children. But, it happened. This changes the game for me. Now what? What about Mike? What does this mean for us and for him? Does he really understand what he is getting himself into? I always knew that if I didn't have HD my life would go on as though nothing had changed and I would just keep doing what I am doing, but if it's positive? Do I crawl into a hole and never leave my house, or push my friends and family because they supported me in making what would seem to be the worst choice of my life, do I tell Mike to run far far away from me because I'm about to morph into a monster? For the love of God what do I do? What did you do?
Each day I pace back and forth in my own head trying to make sense of this disease and how and why it has impact me, my life, and my family. Why us?! Oh, my Lord that is a different post in itself. I try to remind myself I have amazing friends in the HD community that I will only refer to as A, L, T and D, who have the best clue as to what I am about to go through and who have really sit by me and hold my hand and lend a shoulder for this rocky road I'm trying to walk down.
Any advice? Please leave it as a comment.
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Hi Angela,
ReplyDeleteMy name is Danielle and I am board member for the hdsa IL chapter. I grew up in New Mexico and my parents continue to live there. I just got done reading your blog and couldnt help myself to respond to it. This can be a very confusing and scary time. Please stay strong. I know many questions are spinning in your head but as I write I cant help but see you have made your decision to get the test done even if you didnt say it out right. I know you are worried about Mike and how this will change your life but you struggle with these questions as if you are defending yourself. That you may not want to know cause you are scared but it seems deep down you want to know so you can plan your life.
Let me take a step back. I was in Mikes shoes 5 years ago. My husbands mother had tested positive for HD. When we found out, we had all the same questions you have. We were not married at this point, no kids, and 22|23 years old. Ultimately the choice was his to get tested or not. He felt he wanted to know so we knew how to plan. What to look out for when symptoms came about, a future with children and a future together. He battled putting me through this disease. That he would forget and not have control but it would be me who would live with it and take care of him. I told him that I loved him and supported his decision either way. I personally couldnt live knowing him going through it alone without a partner. I also couldnt stand if it was another woman going through it with him. He was going to be my partner for life with or without the disease. If Mike feels the situation is not right for him it does not make him a bad person. Everyone handles things differently and some have a hard time seeing their loved ones in pain. There are so many new things towards treatment every day. I feel in my lifetime they will find a way to stabalize the disease.
When thinking about children, as you know there is a 50|50 chance to pass it on. We were gun hoe on not having children with the disease. You do have options. You can get invitro and pull the bad genes from your eggs and then get them reimplanted. It is not cheap! Scary expensive but it is an alternative that has worked! We ended up becoming pregnant naturally. I do have my moments that I cant believe that I have done to my daugthers life then again I couldnt have asked for a more perfect little blessing. I do fear she will have the gene but I trust that she will live a full and happy life. As soon as you take the test and if you find out that you have it your life will not end right then and there. It will be emotional but you can move forward. You can still do and have everything you have ever want in life if you keep moving forward. Do not let it hold you back from living life please! My husbands brother decided not to get tested cause he feels he will live with that on his mind and he doesnt want to have to think about it. After some time you dont really think about it. Planning becomes a natural thing in your life. It does not effect our everyday life. I took part in the IL chapter to help raise awareness and fund to the disease, this helps me get through it. Mu husband, forgets most of the time he even has it. Live life! Dont let the results if positive hold you back. You will find many support systems all around you. I do hope for a negative, if not, stay strong and keep a smile on your face. Everyday is a new day.
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