Anamaria's Journal
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August 16, 2008
Life
Well i have decided to write since i havent in awhile.. ive been so busy with school. work and housework. Laura is doing ok. she received her hospital bed and put it in the living room that way she doesnt have to use the stairs so much. she likes it and its set up pretty cute that way it doesnt completly stick out. she has started going on this binge eating thing though.. i mean she has always eaten so much and now i hear her in the middle of the night.. and shes on a ton of sleeping meds but yet she will still wake up. i dont know what to say to her.. i mean shes always complaining of a bad stomach becasue of how much she eats but she still does it. and i get really frustrated but at the same time i never get mad at her. I mean yea its hard but who knows when she wont be able to do any of this stuff. It's just so hard at times. Kathleen is doing ok.. she just got approved for Make a Wish and she chose to meet Hannah Montana! she is so excited.. she says shes going to wear a hanna montan shirt and fingernails. lol.. i honestly had no idea she liked her but hey its her dream.. i tried to convince her to tell them she wants one way tickets to the bahamas for everyone but she said no :) oh well. lol.
I recently started visiting this site more because to tell you the truth i was kinda avoiding it. i tried to avoid thinking about HD as much as i could. jesse has decided to get tested ( not really sure when) but he has talked more about it and he is the type that does not talk .. i mean not at all.. so it felt nice to be able to express to him some of the feelings i have been going through.. and i wanted to make sure he knew that i would always love him and be here. I told him that we would make the best of whatver we had and enojoy each other now without any worries , we could save all the worries and tears for whatver is to come. He seems to agree which makes me so happy beacuse the first time we talked about it he sorta told me to shut up and that if he had it he would just go crazy and do all kinds of crazy things. ( scared me to death actually) but im glad that he has thought more about it. Its just so hard because i want children with him more than anything.. dont get me wrong.. I love his son to death. ive been here since he was about 4 and ive helped out in every way i could but i want to experience being pregnant and having a lilttle baby. but what can i do.. i dont make the rules and i cant change them.. i just take them as i get it and make the best of everything I have.
I've recently started talking on here with a coupld people who are in my boat and ive learned so much from them just in the couple messaegs we;ve had. its so nice to hear from peopel who understand and know EXACTLY how you feel. so thank you!
I also went to my first support group with becky, holly and marie and let me tell u ,.it was an experience.. i held back tears the entire time. watching the other coupls talking about everything just scared me even more.. i sometimes think that i cant handle it and i wont be able to handle it and i dont know what to do.. it just feels like such a bad nightmare and that pretty soon ill wake up and be back to normal reality. i dont know im sure i sound a mess lol.. im talking about all kinds of things. but hey i feel better letting it all out..
thanks again to everyone on this site..
you are all in my Prayers.. -
June 13, 2008
Hospice.......
Well Laura has been put on Hospice... I guess it is better that way they can make her life as comfortable as possible.. it just is such a big step and i know so hard for the family.. the nurse is very sweet.. Holly ( laura's sister) actually works for them as an aid so i know they will take extra care of her.. they said to them it seems like she just entered stage 5 so she is still mobile.. they ordered a wheelchair, medical bed walker and shower bench to make things easier.. and now she finally gets some good drugs to help with some of her pains and stuff. She is still going to be living with us and I will still help her as much as possible but im glad that she gets to see the nurse at least twice a week.. She seemed happy about that..It was so strange sitting there last night while the nurse talked to laura and the family.. just hearing her talk about laura passing and all the details of everything.. i just cant help but wonder what in the world is going through her mind? i mean hearing the words they said and just knowing that something is tearing through your body.. so unbelivable to me.. i dont know.. its just all so much at one time.. im still sitting her as somewhat of a bystander whatching everyone go through this and i just cant grasp it and cant imagine what they are thinking or going through... again im just ganna pray and pray...
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June 12, 2008
So much to handle...
Well today has been a day full of bad news..Laura's daughter Kathleen went to the neurologist for the first time and left with terrible news.. News so unreal that it took about 6 doctors to examine her.. She has JHD but a rare case of it. She is the first to ever be documented so young and it inherited from the mother.. All of the other cases have been passed from the father.. sadly it is very agressive and she is already entering stage 3.. This is just so much to take in.. It's got me so numb and i cant even begin to imagine how the family feels.. i mean it is hard enough watching laura who is only 23 years old and have her go through this ...now Kathleen has to endure this fate. She is sooo young and just a baby..i still cant grasp it.. i know God gives you only as much as you can handle but geez he must really really trust this family.. because they have been through so much.. Lately this is all thats been on my mind.. i find myself staring at laura just trying to understand ... she is just such a wonderful person and even though this disease is tearing through her body you can just see her eyes glow at the mention of Kathleen..I love that part.. She too just went to the doctors yesterday and found out she has just entered stage 5.. this is all just so unreal.. they are both soo young ... i just dont get it.. i just keep praying and trying to just trust God because i know thats what im supposed to do... but sometimes its just so hard .. i just want to be here for everybody because like i said i know whatever im feeling and thinking that they must be feeling so much more and i really dont know how they feel because im not in their direct shoes and have never really had to endure this kind of pain.. all i can do is be here and pray for a cure....a really fast cure...
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June 07, 2008
Has Anyone...
I was just wondering what is the youngest age that juvenile huntingtons has hit? i was reading and it says the chances of having symptoms before the age of 10 is like 1%.. my boyfriend's sister who has JHD was diagnosed in her teens but now her 5 year old daughter is said to be in stage 2 already.. It's all too crazy ..