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ITS 3:30 AM MAINE TIME I FEEL GOOD

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Posted 1/6/2010 8:50 AM (GMT 0)
its nights like this i never want to end.....so i dont sleep even thought i could....and i could sleep quite well.....im just enjoying being in that state of pain where its just a dull throbing......the lil man with the knife is sleeping now i think......so its a good time to reflect on just how precious these moments are in my life now.....as i get older being (33) im not that old....i dont think... but as i get older dealing with this life style gets somewhat easier for me......not the dealing with it but predicting it as it were.....i can usually tell when a "good day" is coming now which is nice..........because i can make some plans without the lil man ruining them for me......having two small children is my biggest challenge....i hate the disappointment in their eyes when dad cant do things with them.....i cant make promises cuz i never know what tomorrow will bring.....it is nice though on nights like this if i dont sleep....cuz when its time to wake them up for school i can give them each a big hug and not fear that it will hurt....they know all to well that dad hurts all the time....i try my best not to let it interfere with their lives but it really affects them as much if not more than me.....its not bad enough i cant play with them like a normal dad would....the thing that hurts me more than anything is the not being able to support my children financially.....work for me is darn near impossible....thing is try getting the social security administration to realize that....then i would be doing something....all i want this year is the ssa to give my family what it deserves......thats all nothing more nothing less.....i paid in my money everyday every week every month and every year i worked from the time i was 14 and i know its not that long of a work career but i always had at least two jobs if not three or four......i have paid in...now my family need what i paid in for....i think its time for that to happen....five years is long enough...................................
Posted 1/6/2010 3:05 PM (GMT 0)
My heart goes out to you. I know how frustrating it can be, to be held up w. bureaucracy. Best of luck. Gotta warn you though, staying awake even when you can sleep at night isn't going to help pain in long run.
Posted 1/6/2010 3:47 PM (GMT 0)
This has to be hard for you as a young father, yes you are quite young to me. I didn't get all this crap til my sons were raised and for that I am thankful.

 

I understand you wanting to cherish every second when your feeling good but like Tyno said sleep is very important to us and lack of sleep can put us in a flare. I stay on a very strict sleep schedule.

 

I do hope this good time last forever for you!!!

 

luv and hugs

Marlee

Posted 1/6/2010 7:07 PM (GMT 0)
I totally agree that sleep is essential for fibromites.  If you get a good nights sleep, the good day could turn into good days. 

 

I was really suffering from Crohn's disease when my children were young and I couldn't be far from a bathroom.  So, there were many things I wanted to do with my children that I couldn't do.  I, too, felt guilty but I was home for them and I was there whenever they needed me.  They are all grown now and have assured me that they thought I was the BEST MOM of any of their friends.  They could depend on me and they weren't lacking for anything...especially love.  Love is the most important thing you can give and do for your children and you sure can love them with fibro!

 

I am on Social Security Disability due to the death of my husband and not being able to work.  I have fibro and I'm legally deaf.  But, my husband only paid into the system for 21 years before he died and so the money you receive isn't wonderful.  Plus, you would get 1/3 less of it because you would be taking it early.  Now that hurts the wallet!  I was hoping, when I turned 65, it would go to the normal amount that I would have received if I hadn't taken it early, but I won't.  I'll always get the reduced benefit.  But, if you really can't find anything that you can handle, the disability is great.  Just wanted to let you know in case you didn't know how it works with disability.

 

I hope you start having many, many good days now and you won't have to think about disability!

 

Sherrine 

Posted 1/10/2010 5:11 AM (GMT 0)

Sherrine said...
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<FONT]Sherrine


thank you for the info....i feel that all info is good info weather or not you already have it....now the best days i have are the ones that follow no sleep at all.....it seems when i sleep i get too relaxed and thats when my fibro really starts to act up.....if i stay on guard all the time i do better.....thats where my lack of consintration comes in i cant stay focused on anything other than the pain because when i forget about the pain it always reminds me why i shouldnt....but thanks again and i hope you have some good days ahead also......
Posted 1/10/2010 5:53 AM (GMT 0)
dogze,

Bless yourself for trying your best to be a good father. There are plenty of healthy men out there who don't spend ANY time with their offspring. Your children will grow up fine, probably even better than if you had been Super Dad, because you cherish the time you spend with them. Hang in there and KOKO! (Keep on keepin' on!)
Posted 1/10/2010 6:11 AM (GMT 0)
i dont know jeanine all i want is to be able to support them a lil more financially and the ssa isnt making it any easier by not letting me collect ssdi.......when is does finally go through we are headed to disney world the next day that is a fact...i dont care if i get the check when they are in school we are leaving at the moment it gets deposited in the bank....oh yeah i got my on millionth denial letter today....im calling lawyers on monday.....i just want to find one that i feel comfortable with thats all.....thanks for your support and thank you everyone else

best wishes john

Jeannie143 said...
dogze,

Bless yourself for trying your best to be a good father. There are plenty of healthy men out there who don't spend ANY time with their offspring. Your children will grow up fine, probably even better than if you had been Super Dad, because you cherish the time you spend with them. Hang in there and KOKO! (Keep on keepin' on!)

Posted 1/14/2010 11:21 PM (GMT 0)
just movin up
Posted 2/8/2010 5:37 AM (GMT 0)
bump
Posted 2/10/2010 5:45 AM (GMT 0)
bumpity
Posted 2/10/2010 5:44 PM (GMT 0)
Grumpydogze, please stop bumping this to the top of the page.  You have gotten a lot of responses already and when you bump this up, it knocks down the new questions.  I think the members have said all they will on this topic because you have gotten zero responses the last three times you bumped it up.  Thanks for understanding!

Sherrine 

Posted 2/10/2010 7:40 PM (GMT 0)

Social Security is a marathon.  Don't give up.  I was denied and denied, got a lawyer, had a hearing and was denied again.

After all that I wrote to them and said this doesn't make sense.  I shouldn't be denied.  Guess what?  they approved it.  Just a hint.  Keep your answers short and sweet.  Too many words and they won't read it.

Posted 2/10/2010 8:43 PM (GMT 0)
i always feel good at odd hours of the night.
Posted 2/14/2010 10:34 AM (GMT 0)
my only answer is that "I AM IN PAIN LOTS OF IT WANT SOME....." MAYBE THEY JUST DONT LIKE THAT....

it's a new day said...
Social Security is a marathon. Don't give up. I was denied and denied, got a lawyer, had a hearing and was denied again.

After all that I wrote to them and said this doesn't make sense. I shouldn't be denied. Guess what? they approved it. Just a hint. Keep your answers short and sweet. Too many words and they won't read it.

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