My first post into the blogging world…

Hello to the internet world!  I am so happy you found me!  Let me introduce myself.  My name is Kim.  I am a 39 (and holding dearly) year-old married woman.  I have four beautiful kids and was blessed with my first granddaughter about 3 weeks ago.  I am living a life at-risk for Huntington’s Disease.  I am sure some of you are wondering what in the world this Huntington’s Disease is and some of you know EXACTLY the demon I am talking about.  Life is a daily struggle to live at-risk for this disease.  Many people judge you for not being tested and others judge you for being tested.  I have decided to live my life without testing at this time.  I do struggle each day with wondering if every little thing is an “early symptom.”  For example, I will be laying in bed at night and get a knee jerk, or my body will jerk, or during the day my memory will slip.  Is this Huntington’s or is this a normal life?  Everyday is like this.  Some days are better than others.  It feels like being between a rock and a hard place.  By not testing for the gene I live a life with an unforeseen and hard to plan future.  By testing I could get the fantastic result of “negative” or I find out my life will also be taken short by this evil disease.  By finding out I am positive it also now puts my children living the “at-risk” life I am now living.  I guess I’m not ready to put them where I am right now.  It can be a very lonely and scary life that so few understand.  On the other hand I realize I need to see each day as a blessing and try and live life to maximum enjoyment.  Some days are much easier than others.  This is a personal journal I guess you would say.  A personal journal of my ups, downs, changes, etc.  I will forewarn you if you are looking for a grammar specialist you have stumbled upon the wrong blog.  I have never been good at knowing where the comma’s go or wondering if I should’ve started a new paragraph.  If you want to read about the struggles of living with HD in your life you are at the right place.  I will talk about my husband, my children and my new precious granddaughter.  I will talk a lot about my parents and my amazing sister.  I will talk about my extended family.  I will talk about trying to lose weight and my passion for simplifying my life so that I can spend more time with my family.  I will write about my hobbies and my friends.  I have a wonderful life and I consider myself to be very blessed.  I also live a life with a huge question mark.  Every decision I make in life always seems to come back to Do I have Huntington’s Disease?

I hope you enjoy reading my blog and look forward to getting to know new people.  If you are new to Huntington’s Disease I will be posting more soon about the disease itself.  I just wanted this first post to be a look inside my world 🙂

Kim

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10 thoughts on “My first post into the blogging world…

  1. This is such an enormously hard place to be, and I understand it so well. I could not live with the constant questions, deciding it could not be worse to find out I was positive, than it was to question each stumble, each lapse in memory. FOR ME (because it is so personal), that was such a horrible place to stay. I am negative, thankfully.

    My sister waited MANY years to get tested, had her daughter, etc… and then realized that she was living in an HD prison anyway, always guessing and worrying. She is positive, but says she is so grateful to not wonder anymore. She is living her life fully and looking into studies, etc that she can participate in. My brother never got tested, but we all believe he has it… tough road, either way.

    Congratulations on starting your blog and finding a voice for this. It is a hard burden to carry, whether you are positive or negative. Living with HD in your family is truly that rock and hard place.

    • Thank you. I am so thankful you are negative. I know it is a 50/50 chance but it seems like you just hear so many positive results. I know that this negative result still leaves you in a caregiver situation. HD seems to just like to hang around, unfortunately. I look forward to getting to know you and reading your thoughts! Thank you again!

  2. Welcome to the blogosphere. I’ve lost a grandmother, father, brother and sister to HD. On top of that, I have lived in fear of the disease for my entire adult life. It is not easy to live with the sword of Damacles hovering over you. Whether you test or not, HD has touched your life and you will never be the same. The best you can do is to live your life as best you can. I hope that your blog offers you the katharsis that you are looking for. There are plenty of other people who have had to care for a loved one with HD on line. Try doing a Google search for “caregiver” and you will find others who have had to deal with similar issues. HD is terrible but it is not the only dibilitating disease.

    • Thank you for the comment! I am just floored at how big the HD community really is. When you are growing up with it you feel so alone and then you really look and see this is affecting so many people. I’m sorry about the losses you have encountered in your life and I’m sorry you are with me in the “at risk” boat, as me and my sister put it. I look forward to reading more on what you have to say 🙂

      • It is an eye opener to learn how prevalent HD is. It is also illuminating to know that the disease is genetic. That means that if everyone with HD in their family were to track their family trees, we would all find a common ancestor. In other words, we are cousins, I just do not know how many times removed we are. What is really sad is the number of other people whose loved ones are suffering from other motor/pscychological conditions other than HD.

  3. I saw that you subscribed to my post, and I am honored. I wanted to share something that my mother-in-law told me when I was having a really hard time dealing with this. (She lost her husband to Huntington’s last November, and it was a long, hard road with him…) I was freaking out because my husband, who I think I love more than any other wife loves her husband, has a 50/50 chance of having Huntington’s. And my three children are at risk as well. Not only do I worry if they have it, I hate knowing that one day they could grow up to feel this sick, sinking feeling that we feel, wondering about the disease… She said this to me: “Mackenzie, this is the way I have looked at it. Life is short and full of suffering. Everyone has been given a life–some people live a long time, some people live a short time. Everyone suffers. I just decided I wanted to live a life without regrets. I want to live every day without looking ahead and being afraid of the future, or looking back and wishing I had done things differently.” It was really profound to me, and I believe that is the best way to live life. She also told me this: “When the storm comes, God will walk you through it. Don’t ask me how, but somehow, God walked me through this. He will do it for you when you need it.” I just wanted to share this with you.

    • Thanks for the comment! I am so sorry about your father-in-law. Our stories sound quite similar. I agree with what your mother-in-law said to you and I loved hearing it. Thank you for sharing it. I think you just have to get up each day and live that day to the absolute fullest and best of your ability. Some days are easier and some days are harder than others. I do believe God walked us through the storm with my Dad. Thank you for blogging and I look forward to reading more from you!

  4. This is great. Please take a moment to remove the “uncategorized” label, so my scanners will pick up your new stuff automatically. Let’s use both “HD” and “Huntington’s Disease” as categories, for easy connections. Is that okay?

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