Aa
To ALady1620 and other posts
This is in response to your post below.
How well I know that people desert you when your sick. I've done this treatment thing 8 times. When I'm off of treatment everybody seems all nice and want to do things, and email me, etc., etc. But, once I go on treatment, it's a whole different story. It's like they don't want to be bothered with a sick person. I don't know about you, but I do not work. I can go for days without hearing from anybody. My sister works full time so I'm lucky if I hear from her once a week. I've just gotten to where, I don't expect people to call me or email me. Then, if they take a notion to, it's a nice surprise. I get tired of always being the one to try and make contact people and then, they never return my call when I've left a message. So, eventually, I stop leaving the messages. I have to say that I do have one friend that has done a good job of being there for me (at least once a month) and if I have a prayer request I can usually count on her to get back with me.
I tell you all this stuff to try to encourage you in that you're not alone in this. It's helpful to me to come here to the message boards, just so I stay connected.
Susan
How well I know that people desert you when your sick. I've done this treatment thing 8 times. When I'm off of treatment everybody seems all nice and want to do things, and email me, etc., etc. But, once I go on treatment, it's a whole different story. It's like they don't want to be bothered with a sick person. I don't know about you, but I do not work. I can go for days without hearing from anybody. My sister works full time so I'm lucky if I hear from her once a week. I've just gotten to where, I don't expect people to call me or email me. Then, if they take a notion to, it's a nice surprise. I get tired of always being the one to try and make contact people and then, they never return my call when I've left a message. So, eventually, I stop leaving the messages. I have to say that I do have one friend that has done a good job of being there for me (at least once a month) and if I have a prayer request I can usually count on her to get back with me.
I tell you all this stuff to try to encourage you in that you're not alone in this. It's helpful to me to come here to the message boards, just so I stay connected.
Susan
I have talked to you about my twin boys , I was in a similar postion when my were little sept i wasnt on TX. I know how hard it is to find day care or a moms morning out there is always waiting list and the cost for 2 is high, what i did was drop the house work for half the week buy a plastic swimming pool and just sat in it for hours they love it , it wore em out and they took longer naps, i joined a church were they have childcare and i would be free to enjoy the service, also some churches offer parents night out programs for 5 dollars you get 4 hours and pizza for the kids, also find a park that is kind of closed in so you dont have to go chasin after em every 5 seconds, i know these are little things but they helped me make it through, Alady i can tell you are a strong lady, you may be a little down now, but it wont be for long. I also started working in church MMO programs were my child care was free it got me out of the house made a little money, and my kids really enjoyed it....
I too have found myself a bit of a pariah and outcast since I came out of the Hepatitis closit. I am fortunate in that I don't have to work but still, I miss having a few pints of Coors Light with my pack of buddies every Friday. (I come from Portland, Oregon where there is a zoning law that each fifty parcels have at least one working mini-brewery and yes, I still loved Coors Light.) Anyway, it seems that a lot of folks have gotten their heads out of their poop-shutes over AIDS and have reinserted their heads over HCV. My alias for this and other forums is dog-lover, there's a very good reason for that... Peace
Alady says: I have to find some strength for them.
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As others, including myself, have found, the only help you can reliably count on is within. Sounds like you have that in spades and once you dig deep you should be fine. Any outside help will be gravy. Hope you can work things out better with your husband because gravy does make things taste a lot better. And who knows, the stronger you become, ironically the more supportive he might be. I've seen that happen. All the best.
-- Jim
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As others, including myself, have found, the only help you can reliably count on is within. Sounds like you have that in spades and once you dig deep you should be fine. Any outside help will be gravy. Hope you can work things out better with your husband because gravy does make things taste a lot better. And who knows, the stronger you become, ironically the more supportive he might be. I've seen that happen. All the best.
-- Jim
I agree with spacecoast on this. And there are many org. that hepe single or married moms with children.. PLease seek them out for help, but stay strongh and I promise you it will get better.
BEAGLE
BEAGLE
Well, it's a new day and I wish I could say I feel better but I don't. I have resolved to buck up and suck it up as spacecoast suggested. This isn't just about me and my well being. It's about my children too. If it were just me, I could get through a lot easier. I have to find some strength for them.
Thanks for all of your pep talks. It helps to be able to come here and vent. I don't really have anybody to talk to about this in real life.
Thanks for all of your pep talks. It helps to be able to come here and vent. I don't really have anybody to talk to about this in real life.
Did you know that you can get 50% of your husband'd SS if it's higher then your? And he can still be working, it doesn't matter.
EX: if you only get $450.00 now but you husband at the moment would get $1400.00 if he was on SS, you would be entitled to $700.00 a month.
BEAGLE
EX: if you only get $450.00 now but you husband at the moment would get $1400.00 if he was on SS, you would be entitled to $700.00 a month.
BEAGLE
With regards to my 8 times treating it's because my doctors have always been concerned about my liver damage thus far and my being a 1A/1B. I guess the different doctors that have treated me rationalized that by treating that I was delaying more damage, or whatever.
With regards to my not working. I worked from the time I was 16 with a few breaks in between up until age 40. I was struggling with all my health issues and finding it more and more difficult to function in an employment setting. I even tried to go back to work on a part-time day, lasting 1 day. I just couldn't do it. My husband has health insurance on me through his job, which covers my meds. And after 3 years of trying and a lawyer, I was fortunately to get my Soc. Sec. Disability, which has Medicare, which covers my doctors visits and tests. SSDI does not give you a lot of money, so it's not as if I'm taking the government for Bookoo bucks. They take a huge portion of your monthly allotment for Medicare premiums and then after I pay my normal bills, I have only $400-$500 to last me a whole month. If it wasn't for my husband helping out, I wouldn't be able to live on that. I suppose if I had worked at higher paying jobs before I got SSDI, I might be getting more in my checks. But, you do what you have to do.
Susan
With regards to my not working. I worked from the time I was 16 with a few breaks in between up until age 40. I was struggling with all my health issues and finding it more and more difficult to function in an employment setting. I even tried to go back to work on a part-time day, lasting 1 day. I just couldn't do it. My husband has health insurance on me through his job, which covers my meds. And after 3 years of trying and a lawyer, I was fortunately to get my Soc. Sec. Disability, which has Medicare, which covers my doctors visits and tests. SSDI does not give you a lot of money, so it's not as if I'm taking the government for Bookoo bucks. They take a huge portion of your monthly allotment for Medicare premiums and then after I pay my normal bills, I have only $400-$500 to last me a whole month. If it wasn't for my husband helping out, I wouldn't be able to live on that. I suppose if I had worked at higher paying jobs before I got SSDI, I might be getting more in my checks. But, you do what you have to do.
Susan
Now before you get those ears a floppin and that tail a waggin remember your hgb. But yes you can bring a virgin mary, or sally, or lisa.
I just now got around to reading some of the posts, I was mortified when I read yours,....you poor sweet thing.
I cant imagine having twins running around while going through this! You are deserving of "time off" whether your tx or not, thats just plain hard under the best of circumstances.
Just ignore any "negative" comments, prolly they were having a little pity party of thier own when you started venting, its hard to be understanding when you are already feeling so misunderstood.
As far as "the hand you were dealt" well,.....we wont even go there.
Just because we have an "unpopular" disease doesnt mean that somehow we "deserve" it.
Gosh, let some celebrity on TV talk like that about someone with AIDS, and the media would be all over them with the critism.
But hey, maybe one day, with the help and agony that everyone here endures, maybe one day there will be more education, funding, and a little compassion for those who battle chronic illness and pain.
lilmoma
I cant imagine having twins running around while going through this! You are deserving of "time off" whether your tx or not, thats just plain hard under the best of circumstances.
Just ignore any "negative" comments, prolly they were having a little pity party of thier own when you started venting, its hard to be understanding when you are already feeling so misunderstood.
As far as "the hand you were dealt" well,.....we wont even go there.
Just because we have an "unpopular" disease doesnt mean that somehow we "deserve" it.
Gosh, let some celebrity on TV talk like that about someone with AIDS, and the media would be all over them with the critism.
But hey, maybe one day, with the help and agony that everyone here endures, maybe one day there will be more education, funding, and a little compassion for those who battle chronic illness and pain.
lilmoma
I am doing okay, went for CBC check up the other day. They say I be doing just fine! I'll hide behind the weeds in my yard and wait for you to swing by.
Hey there, how ya doin?
Can you believe it, I actually have been back to working out with my weights again!!!! Whooo Hoooo!
I love excercise, it really helps my self esteem to be strong, ready to kick butt. (not literally) I am actually a pretty light hearted person under different circumstances.
I am findin out what Im made of though,....and honestly, I am not well pleased,....I feel like I have been a real whiner and complainer, even if most of what I m saying is true, I should have excercised the strength to keep my mouth shut about it.
lilmoma
Can you believe it, I actually have been back to working out with my weights again!!!! Whooo Hoooo!
I love excercise, it really helps my self esteem to be strong, ready to kick butt. (not literally) I am actually a pretty light hearted person under different circumstances.
I am findin out what Im made of though,....and honestly, I am not well pleased,....I feel like I have been a real whiner and complainer, even if most of what I m saying is true, I should have excercised the strength to keep my mouth shut about it.
lilmoma
I so sorry you guys are feeling so bad. Susan doing this once is enough, but 8 X's I can't even think of that.
BEAGLE
BEAGLE
I didn't even know you could do it multiple times. My doc is telling me that in two weeks my blood test results will show if the tx is working, if not, then he will say stop treatment, it's wasting my time...I didn't think that could happen and then start again, is this a true statement? I'm scared to death to think this was all for nothing....
How can I be doing this tx and not responding?????
But I won't know until 2 weeks. I would hate to think I went through this and then he says...stop...it's not working....Nonsense!
How can I be doing this tx and not responding?????
But I won't know until 2 weeks. I would hate to think I went through this and then he says...stop...it's not working....Nonsense!
Sad but true for some. tx doesn't work. But in your case you'll be fine , its working. How do i know you ask? Well some call me crazy, don't have both oars in the water. (course don't have a boat so why would i need oars?) But sumin tells me its working for you so it has to be. So don't stress it or worry to much. And becareful out there its a crazy ole world.
Good for you, your invited to the pool party at fisheress i can swing by after i pick up pretty posion.
Guess i should have told fisheress, OH WELL, you take care gal.
Guess i should have told fisheress, OH WELL, you take care gal.
Hey, WHAT POOL PARTY?????????
Am I invited, I'll bring the virgin Bloody Mary!!
BEAGLE
Am I invited, I'll bring the virgin Bloody Mary!!
BEAGLE
Yeah Im up,....have a inner turmoil night.
My hubby has pre cancerous stuff on his head, he has only two more shots to go, but he is so sickly all the time, and with the addition worries that maybe he has other things going on, well it is hard to have positive thoughts about a real future.
It would be easier to just say good night after popping a zillion saved up pills or something, and being done with it.
My gosh I dont have a college education (and no it wasnt my fault, b/c nobody has the slightest idea what my growing up experience was, suffice it to say "I had no child hood" I feel like if I quit this job I just go to another dead end job where people talk to you worse than they speak to their garbage man.
I just want a level playing field, I will work my toush off for my boss, just stop f#+*&$g with me, leave me alone.
Then I am so lonley all the time, cuz I dont have any friends, my job allows me to work like a freakin pack-mule all day then I collapse at home, that is not a quality of life.
it really sucks can do, and I dont believe there is an answer out there, thats the real dpressing part of it,....no control
AAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGG!!!!!!!!!!!!!!!!LILMOMA
My hubby has pre cancerous stuff on his head, he has only two more shots to go, but he is so sickly all the time, and with the addition worries that maybe he has other things going on, well it is hard to have positive thoughts about a real future.
It would be easier to just say good night after popping a zillion saved up pills or something, and being done with it.
My gosh I dont have a college education (and no it wasnt my fault, b/c nobody has the slightest idea what my growing up experience was, suffice it to say "I had no child hood" I feel like if I quit this job I just go to another dead end job where people talk to you worse than they speak to their garbage man.
I just want a level playing field, I will work my toush off for my boss, just stop f#+*&$g with me, leave me alone.
Then I am so lonley all the time, cuz I dont have any friends, my job allows me to work like a freakin pack-mule all day then I collapse at home, that is not a quality of life.
it really sucks can do, and I dont believe there is an answer out there, thats the real dpressing part of it,....no control
AAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGG!!!!!!!!!!!!!!!!LILMOMA
Hi lilmoma, glad you showed up. And i'm your friend lilmoma, nothing to good for you. Hope your feeling better.
Things will work out for ya girl, you have a good heart, your kind, caring, I deal with people who have it all, but really they have nothing. I know some pretty stupid people with a college education. You just keep your head up, and remember those type people sh*t don't smell any better then ours. With you both doing this tx at the same time has got to be tough. Now wheres my smile?
LOL.... I see you rested up tonigh after working 10 hrs today. How are you doing?
BEAGLE
BEAGLE
Oooo - remember the Baby Ruth in the pool???? What movie was that?
Lil Momma, sweetie, I really feel for you. I know since I have been on treatment all my energy is going to work and doing my job and going home and doing my job there. I just don't have extra energy right now to "have a life" like I did before. But I got my priorities, one of which is eating and paying bills. I know that this will be over soon, and I will "get a life" again. You will too! Sometimes bosses need replacing, and karma does happen! You are young, you have lots of time to find a great job that you love - just get thru treatment now, one day at a time.
Lil Momma, sweetie, I really feel for you. I know since I have been on treatment all my energy is going to work and doing my job and going home and doing my job there. I just don't have extra energy right now to "have a life" like I did before. But I got my priorities, one of which is eating and paying bills. I know that this will be over soon, and I will "get a life" again. You will too! Sometimes bosses need replacing, and karma does happen! You are young, you have lots of time to find a great job that you love - just get thru treatment now, one day at a time.
Alady,,,,I'm sorry that you feel like you have been put by the wayside but you have to understand one thing.....Its sad but true,,,,most people don't have a clue of what you are going through and majority people tire quickly when you are ailing and sick. I did tx a couple years back and in beginning was upset that noone really understood. I then decided to not depend on anyone so therefore relieved my stress by not expecting anything and any one that offered help would be icing on the cake. Maybe your mom,,,,instead of making the long drive could just help you out with some babysitting money to pay someone to give you a break here and there,,,,Just a thought. I'm sure you will work it out and be your tx will be over in no time. Best Wishes!
:) :) :/ :( my many moods...................................
We go through all this and the even if we get the UND it can come back,....not to mention brigdes that are being burned by what this stuff does to the head.
Can do I know I have alot of baggage, it is the natural process for someone who grew up like I did.
All the doc s in the world cannot erase what as done do me.
I need Devine Intervention
lilmoma
We go through all this and the even if we get the UND it can come back,....not to mention brigdes that are being burned by what this stuff does to the head.
Can do I know I have alot of baggage, it is the natural process for someone who grew up like I did.
All the doc s in the world cannot erase what as done do me.
I need Devine Intervention
lilmoma
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