After an argument today with my mother, probably not the best way to come about a decision, I've made up my mind that I will be getting tested for Huntington's Disease. I am too wrapped up in the what if's, that planning and living my life has become even more of a struggle. If I don't have it of course that will be a gift from God, but on the other hand that I do have it, well who knows what will happen?
Talking, well arguing rather with both my mother and grandmother today about what I feel and what I am going through lets me know they will stand by my decision, but ultimately it is up to me. Also that from a person who is at-risk's perspective, the reasons behind getting or not getting tested are not fully understood by any party.
I have began to have more slight movements in my feet and legs, some in my hands and back as well. Of course since I am the only one in my body, I am the only one to notice these movements. I want to be tested to take away the dark gray rain cloud that hangs over the heads of many who are at-risk. Wondering each moment, "Did I do that because of HD?" I want to be able to plan my life out, if I have HD, no I will not be having children, I will graduate from college, and I will do everything else to the fullest of my abilities. (I guess).
I wish the people around me could more so understand my perspective. I feel like if I get tested and find out I do have HD I will in an odd unrealated way be letting down my entire family... Because it didn't end with my dad and brother, that it chose me too. That I would be somehow a burden on my mother because we were all taken by this disease and that she will be left all alone with no one by her side. I feel afraid for if/when I will have to deal with people staring at me, not because I just finsihed doing something remarkable, but because I cannot stand still. I am afraid of not being able to care for myself and instead have to rely on others to do things for me. I am afraid that if I were to have it and it were to progress further I will be all alone in the world. That I will silently be remembering when things were different... when things were better.
This decision may seem hasty but as many of you know making the decision is one thing, doing the test is another. During my argument I said, "THEN I WONT TELL ANYONE WHAT MY RESULTS ARE!" As if somehow that would be different than just living at-risk. But, no one else can make this decision, only me, just me.
Tuesday, October 25, 2011
Friday, August 19, 2011
UPDATE: Life and the hard times...
Huntington's Disease brings up plenty of obstacles that get thrown in the way of day to day life for those with HD and the caregivers. Recently with my father, we have had emotional outburst after emotional outburst. A common occurrence at this point of HD. He understands he does not have much time left, he is 5'9" and down to nearly 115 lbs. He keeps losing more and more weight, but the nursing home has finally let him go back on mechanical soft diet instead of fully pureed food which he did not enjoy. He is mostly limited to sitting and laying down. He can't hold himself up or stand anymore due to all the muscle loss. Lucky for him he is still enjoying junk food and good New Mexico chili when we get him some. But he is no longer able to have dairy products because they were making him extremely sick, so no more ice cream or milk shakes for him.
My brother on the other hand seems to be having lost of anger issues that he just loves to take out on my mother and myself. We get the daily "I hate you, you're a B****, I'm leaving..." so on. He's become very emotionally abusive. I wish he could understand the face that he does not have much time left, be that it is years, but when a person has JHD they don't have the expected 10-20 like a person with HD, they have 5-7 years. I would like my brother to slow down, acknowledge how much my mom and I do for him, and stop worrying about those people in the world who really don't care at all about him. It makes it extremely difficult to love someone who everyday tells you they hate you and wish you were dead.
Well that is my short rant for now about life with HD.
My brother on the other hand seems to be having lost of anger issues that he just loves to take out on my mother and myself. We get the daily "I hate you, you're a B****, I'm leaving..." so on. He's become very emotionally abusive. I wish he could understand the face that he does not have much time left, be that it is years, but when a person has JHD they don't have the expected 10-20 like a person with HD, they have 5-7 years. I would like my brother to slow down, acknowledge how much my mom and I do for him, and stop worrying about those people in the world who really don't care at all about him. It makes it extremely difficult to love someone who everyday tells you they hate you and wish you were dead.
Well that is my short rant for now about life with HD.
Sunday, July 24, 2011
2011 HDSA National Convention
Just wanted to write a note about my experience at the 26th Annual National Convention. It was my first year, and I was also a winner of one of the NYA Scholarships!! I must say, the days were long, but the memories will last me a lifetime! NYA day was full of so many new friends from all over the US and the world! Meeting everyone I had been friends with on facebook for so long was like meeting rockstars! It was an indescribable feeling to be in a room full of people from all over the world, who are paddling the same boat as myself. To feel accepted in a place where no one had to ask, WHAT IS HD?
We all became friends so quickly, meeting and sharing our triumphs and tribulations with one another. I life experiences and histories became part of this open book we all shared. From our loved ones suffering, the uncertainty of our own fates, and the nagging feelings we had of being consumed by HD were out on the table like a deck of playing cards... I felt like this was where I belonged.
The first day of the full on convention was full of workshops, lunches, quick trips to the Mall of America, where we would inevitably bump in to more people from the convention who were trying to get their souvenir shopping in as well, seemed like we were all neighbors from the same street, like we had all grown up together for years. No one felt that odd feeling like being the one person left out, we were family. The workshops were full of questions and answers. With people just like myself wondering the same things... I didn't feel alone. Having discussions and breaking the ice with a hysterical joke in my fashion. It was like a whole other world in MN. The first night was spent at Feed My Starving Children, where we NYA members packaged food for children in Africa. Our 45 minutes came and went as we danced around and sang to Micheal Jackson toons. At the end of our packaging and cleaning, we discovered the NYA had packaged enough food for 23 starving African children in Kenya for a year!! Talk about life changing!
The second day was also full of meetings, starting with the research that the HD scientists have been doing. Promising hope for us all that we are much closer. Something we have heard a lot, but it has given me some sense of encouragement. I also took part in some at-risk forums that were run by people who were in fact at-risk, tested negative, or had tested positive. Their advice, plan as though you have it, live as though you don't. I also heard from a speaker on how to deal in relationships, and how spouses deal with being with someone who is at-risk for HD. That seemed especially difficult to hear though, because spouses seem to have a bigger impact on someones choice to get tested than the individual themselves. As well as the decision by the person who is at-risk, because we aren't only finding someone who we will be with forever, but who could also be the person that will be our caregivers.
The Gala, being my first, seemed very pleasant. The food was alright, the dessert was delicious, and there was free drinks :], need I say more? The awards went where they needed to, to the people have done so much for HDSA this year. The candle lighting ceremony was heartfelt and inspiring. I know I had a fantastic time on the dance floor learning the polka, and teaching people the electric slide! We partied down until we could no longer stand. It was a wonderful evening with amazing people.
Well, for the most part this was my experience at the HDSA Convention, and long story short, can you say VEGAS!?
We all became friends so quickly, meeting and sharing our triumphs and tribulations with one another. I life experiences and histories became part of this open book we all shared. From our loved ones suffering, the uncertainty of our own fates, and the nagging feelings we had of being consumed by HD were out on the table like a deck of playing cards... I felt like this was where I belonged.
The first day of the full on convention was full of workshops, lunches, quick trips to the Mall of America, where we would inevitably bump in to more people from the convention who were trying to get their souvenir shopping in as well, seemed like we were all neighbors from the same street, like we had all grown up together for years. No one felt that odd feeling like being the one person left out, we were family. The workshops were full of questions and answers. With people just like myself wondering the same things... I didn't feel alone. Having discussions and breaking the ice with a hysterical joke in my fashion. It was like a whole other world in MN. The first night was spent at Feed My Starving Children, where we NYA members packaged food for children in Africa. Our 45 minutes came and went as we danced around and sang to Micheal Jackson toons. At the end of our packaging and cleaning, we discovered the NYA had packaged enough food for 23 starving African children in Kenya for a year!! Talk about life changing!
The second day was also full of meetings, starting with the research that the HD scientists have been doing. Promising hope for us all that we are much closer. Something we have heard a lot, but it has given me some sense of encouragement. I also took part in some at-risk forums that were run by people who were in fact at-risk, tested negative, or had tested positive. Their advice, plan as though you have it, live as though you don't. I also heard from a speaker on how to deal in relationships, and how spouses deal with being with someone who is at-risk for HD. That seemed especially difficult to hear though, because spouses seem to have a bigger impact on someones choice to get tested than the individual themselves. As well as the decision by the person who is at-risk, because we aren't only finding someone who we will be with forever, but who could also be the person that will be our caregivers.
The Gala, being my first, seemed very pleasant. The food was alright, the dessert was delicious, and there was free drinks :], need I say more? The awards went where they needed to, to the people have done so much for HDSA this year. The candle lighting ceremony was heartfelt and inspiring. I know I had a fantastic time on the dance floor learning the polka, and teaching people the electric slide! We partied down until we could no longer stand. It was a wonderful evening with amazing people.
Well, for the most part this was my experience at the HDSA Convention, and long story short, can you say VEGAS!?
Saturday, May 28, 2011
Family...
I know it has been much too long since I last posted anything about my struggles with this monster, a.k.a. Huntington's Disease. Dad recently got pneumonia, but through the use of antibiotics he seems to be doing better and his fever has gone away. All that aside though, my current issue is with my family.
Everyone has stated how much they are praying for us, and how much they admire our strength as we go through this struggle. I would rather them go see my dad... Some of them say they will and then they don't, they will gather all the information to get to where he is, and no one ever shows up. Recently more people have shown that they care by actually going to see him, which we all greatly appreciate. I understand that for most of them it is too hard for them to see my dad with Huntington's, but it makes him feel better, it puts a smile on his face, and really brightens his day. I know this is a common occurrence in families with HD, much of the outside family does not want to be a part of it, until it is in fact too late. With the statistics out there in the world, people who have visitors when they are ill, they tend to live longer, make progress and are overall more happy about their situation.
I don't want it to be like it has been lately in my family, that when someone dies, that's when everyone comes out to say all the great things the person did or their memories about them. I want them to exchange what they remember with him, while he is still here. One of my cousins is now understanding all the struggles that we have faced due to this disease. And I greatly appreciate that she is starting to open up to this awful disease, that not only is taking my father from me, but my brother too. It really makes me wonder why everyone is so hesitant to see him. He's not going to give them HD, he just wants to laugh and smile with the people that have been there with him to make such wonderful memories with him all these years.
I don't want it to be too late for our family to see him while he is indeed still with us. Five minutes out of their day to go by the nursing home will make all the difference for him. I want him to know that our family is still there for him and do still care, not that they have forgotten about him now that he is sick...
If you are my family and you have read this, do not take offense to it. I just ask you to please visit him, even if it is only once. Just notice that we may seem strong, but strength is only there in times that it needs to be... We are not always strong, we sometimes cry, breakdown, and ask God why? Like I said before, we would greatly appreciate it.
Everyone has stated how much they are praying for us, and how much they admire our strength as we go through this struggle. I would rather them go see my dad... Some of them say they will and then they don't, they will gather all the information to get to where he is, and no one ever shows up. Recently more people have shown that they care by actually going to see him, which we all greatly appreciate. I understand that for most of them it is too hard for them to see my dad with Huntington's, but it makes him feel better, it puts a smile on his face, and really brightens his day. I know this is a common occurrence in families with HD, much of the outside family does not want to be a part of it, until it is in fact too late. With the statistics out there in the world, people who have visitors when they are ill, they tend to live longer, make progress and are overall more happy about their situation.
I don't want it to be like it has been lately in my family, that when someone dies, that's when everyone comes out to say all the great things the person did or their memories about them. I want them to exchange what they remember with him, while he is still here. One of my cousins is now understanding all the struggles that we have faced due to this disease. And I greatly appreciate that she is starting to open up to this awful disease, that not only is taking my father from me, but my brother too. It really makes me wonder why everyone is so hesitant to see him. He's not going to give them HD, he just wants to laugh and smile with the people that have been there with him to make such wonderful memories with him all these years.
I don't want it to be too late for our family to see him while he is indeed still with us. Five minutes out of their day to go by the nursing home will make all the difference for him. I want him to know that our family is still there for him and do still care, not that they have forgotten about him now that he is sick...
If you are my family and you have read this, do not take offense to it. I just ask you to please visit him, even if it is only once. Just notice that we may seem strong, but strength is only there in times that it needs to be... We are not always strong, we sometimes cry, breakdown, and ask God why? Like I said before, we would greatly appreciate it.
Thursday, February 17, 2011
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