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June 11th, 2006

Traveling

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I was up late last night and found these sites on another message
board or at least I don't think it was here...



http://www.gimponthego.com

http://www.disabledtravelers.com


Feel free to post elsewhere etc.

Cross posted to other MS sites and chronic health issues sites.

February 13th, 2006

I created a community for people who want a way to communicate love ones that have passed on from this world to another world, whatever world might be. its called notestoheaven but it is not a RELIGIOUS community. its just the name i came up with when i was making the community. you dont have to belive in heaven or anything other then its a way to talk to those who are not here anymore.

this is a semi active community, but most members are posting as friends only, so if you want to be able to post and see when others posts, you need to choose the join community option instead of just watching it, because you will only get a few of the posts, at least currently.

please let me know if you have any questions. im sorry if im stepping on any toes here, i just feel its an important and a good community to talk about. the group thats there now is really supportive and willing to support others, people who have lost many differnet people in their lives and at different times.

~kirsten

xposted in several communities. sorry if you see this more then once

February 1st, 2006

I wanted to share my new website Protection Wings http://www.protectionwings.com
with everyone. The mission of the site is to inspire, enlighten and increase awareness
of various afflictions which people suffer from, while raising money for the causes. Each painting of a protector is inspired, by real life individuals who have suffered from various afflictions including breast cancer, diabetes, heart disease, Leukemia, Melanoma. I hope you will be blessed from this new site. Please also share it with others so that we can celebrate life, beauty and joy.

January 8th, 2006

I found out along with my sibilings what our mother is sick with.

Creuzfeldt Jakob Disease, The human equivalent to Mad cow Disease.

The normal death rate is 6 months - 2 years to live.
She is going on to 3 years.

There are only 107 cases known world wide.
And my mom is one of them.
they feed chicken's DRY COW BLOOD.

WTF.....

My mother is an ox. I am surprised I wasn't born with a set of horns. I mean I got the big pretty blue eyes like her.


I just can't believe out of all the people in the world, my mom has this disease.

I never knew how much our fucking nation has buried their heads in the fucking sand and don't know jack squat about this disease.
~*~When I read these entries, I finally feel like I am not alone at all... But, it saddens me that so many people are not having any luck... I have really good news on my part, but I contemplated posting... I know if I read that someone else was doing well, I would not hate that person, but yet be jealous... But, maybe it will be a little inspiring... Ok, my dad has leukemia, and is about to go with his fourth (out of six in a series) round of chemo... His glands are normal again and his white cell count is down to almost normal... They are like sooooo confident that we are talking remission... I only pray that God's will will be done... I love my dad, and I know that with his faith in God and a totally caring and loving family, he will make it... I used to sit around and cry about it... I did... I still have days where I break down... It is also really hard for me to hold it together when other people tell me about their stories... I never realized how close to home it could hit... My family has always been overwhelmed with cancer, and not that I didn't care, because I did... But, it is SOOOOOOOOOO different when it is your mom or dad... So, I will pray for the world... I will pray for YOU and yours... I hope you all the best with coping and I hope that whatever happens is the best and only happens according to His will...~*~

January 5th, 2006

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Hi everyone. I wish that I didn't feel compelled to post in this community or that this type of live-journal community had a reason to exist, but I do and it does. Having said that, I am damned thankful that there is a place on livejournal for emotional support. Anyhoo... on with my introduction.

My dad is 77 and was diagnosed with prostate cancer March of 2003; the cancer had metastasized to his bones (hips and right clavicle). He underwent hormonal treatment and opted against the radiotherapy. Maybe some of you are aware that once prostate cancer spreads, it is deemed as treatable, but not curable. Well, good news is that he responded wonderfully to hormone therapy and his prognosis was that he had many fine years ahead of him.

Then, he was diagnosed with mild dementia around July of 2004. He began forgetting things like mad; simple things like making a phone call (he would forget he had called someone), appointments, taking meds, etc. His forgetfulness quickly increased and soon he would mix up names and get utterly lost while driving (he once went to visit my half-sister and ended up in a convenience store on the opposite end of the state (he was lost for almost 12 hours!). After another evaluation and CT scan, his diagnosis was bumped up to full-blown Alzheimer's (stage 2).

I was not kept in the loop by my step-mother and she never told me about his diagnosis, she even went as far as getting offended and telling me to butt out when I would inquire. I live on the in WA state and they are in CO, so I relied on occasional visits home and phone calls. I JUST found out the extent of his condition on Christmas and I am devastated.

To compound the problem, the lines of literal communication were fuzzy to begin with. When I would call his home, the phone was rarely answered, missed calls were not returned and, well, I was simply not informed. :( I chalked his strange conversation to what I believed to be mild dementia. God, if I had only known. Now all of the pieces fit into place and dang. This sucks. I called him today and had a long conversation and he asked me the same questions over and over again... I mean, he asked me where I was living at least 10 times. That seems to be what he can't remember about me... where I am located. He seems to think that I still live in Colorado. I haven't lived there in over two years.

My dad is fading away and I am having a HARD time dealing with this. I cannot believe that I did not appreciate him more, spend more time with him, show him that I loved him more... dad is still around, but not the dad that I knew and he never will be again and the man I knew is going to continue to deteriorate. I don't know what to say other than... ??? This sucks.

My poor dad. I can't imagine how scary it must be to KNOW that something is wrong, but not have the mental capability to know WHAT is wrong, to lose pieces of yourself each day, to be totally powerless in everything, even the mental and spiritual approach you take while living with this disease and dieing from it.

Anyhow, that is my long introduction.

I hope to be able to offer some words of encouragement to everyone here and receive some as well.

Peace and God Bless,
Mandy

January 3rd, 2006

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made by gunshotmelody --better in P!nk--
Wow...I went back and checked and I posted about a year and a half ago. I doubt anyone actually remembers, but I am now almost 18(this month). My Dad was diagnosed with early-onset Alzheimer's disease. He's 47. My aunt passed away this summer from the same disease, at the age of 42. She was diagnosed when she was 38. He's not himself...at all. He can't remember anything. I really don't want to leave my mom next year with him cuz I will be going to college(only 45 min away, but I will still be leaving). I know she will need help. Heck, she needs help now. Anyway, I have a counselor that lost her mom when she was 16, so that's helping.

I have decided that I am going to get a tatoo that says "Daddy's Girl" on it. I want to always remember him, and let people know how special and good he was to me. I don't think I could have asked for a better father.

Anyway, I'm going to go. I hope everyone is doing better, and if you want to add me, go right ahead.

--Shmoo--

October 20th, 2005

update

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Star of Life
my mom is coming to get me.
my father is losing his battle.
i'm not good.
i can't deal with this again.
i am so lost.

October 18th, 2005

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puppy love
Hi, I just joined this community and decided to post an introduction...
My name is Linzi, and I am 16. My father was recently diagnosed with Pancreatic Cancer. Since then they have discovered a few other small tumors else where in his body. Although he is in the lucky 15% of operable pancreatic cancer patients, the doctor cannot guarentee it will be fully removed.
Also my favorite uncle, and my fathers oldest brother passed away about a year ago (November 17 of 2004) fromt the same cancer. It has been hard considering my father found out about the same time my uncle did, and unfortunately for my uncle it was to late for them to do pretty much anything about it.
I am just looking for some support...
Thanks so much

♥ Linzi

My contact info is as follows:

AIM pureinocencia
YIM untitledscream
MSN tincrbell_500@hotmail.com
email untitledscream@yahoo.com

October 17th, 2005

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~*~My dad was diagnosed this past week with leukemia... It all started a few years ago with a back injury, and apparently, my dad has had leukemia for 2 or 3 years... It pisses me off that they didn't find it sooner, but you know... I am soooo scared... He is not in the final stages, but he is far enough along that they want to start treating him like now... I am 22, and I can make it alone, but I don't want to... That is all...~*~
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