View Full Version : HARDER and HARDER to get up in the mornings : (

08-03-2011, 06:39 AM
Okey so I'm still working, I"m lucky enough to work at a wonderful place who understands I'm sick, If I need to take a nap during the day my boss gave me permission to do so, even though I can't sleep! Anyway I've been toying with the idea of either going part time or applying for SS. If I go part time, I not only have to take a 20% paycut but have to pay 20% towards my medical coverage. Right now I have free medical coverage for all 5 of us, which is a BLESSING!

I think If I want to apply for SS, I shouldn't be working. I work with Attorneys who represent in SSI and SS cases, but im afraid to ask one of them. Even though I work for a great place don't want to risk putting rumors out that I cannot work and risk loosing my job for whatever reason.

The other thing is my husband hasn't been able to find a job for the last six months even though he's busting his butt at carreer link every other day, and doint jobs the rest of the days. Its not enough income,.
My mortgage is pretty low, so moving would not make sense, I have car payment and insurance and OHHH so many bills, This is frustrating me.

Ive been getting to work late everyday as I cannot seem to get up in the mornings., Not only do I have SLE, I have Fibro, gastroparecis, Avascular Necrosis on both knees and maybe my hip. I'll know definetely this week. I've had DVT's PE's, severe pericardis and pericardial effusions. Been in and out of the hospital about 6 7 times in the last year (although since I've been on plaquenil) im feeling a little bit better. Lupus symptoms seem to be under control. I need total knee replacements but they wont put my life at risk yet because I have blood clotting issues, so yeah I have to suffer daily with this stupid pain everyday. Aye Aye Aye, I don't know how much longer I can do all this!

08-03-2011, 06:55 AM
And you're still working full time!!! now i feel like a wuz I'd ask if I were you, wouldn't the attorney be legally obliged to keep your discussion private? You could tell whoever you choose to ask that you chose them because you trusted they'd keep it private, and only ask one so you know where any leak might have come from.
Life can be difficult enough without a chronic illness, we shouldn't have to push so hard for so long just to live. Surely you deserve some quality, some care and consideration so your life is as fun as it can be?
I'll be thinking of you, sending positive vibes your way {huggles}

08-03-2011, 07:03 AM
it is a hard decision.
no body can tell you when it is time.............. only you.
i knew when my time came.
and i went bankrupt, lost everything but my family, had to move to a cheaper rental.

but it was worth it in the long run.

do what you need to do for you.

08-03-2011, 12:27 PM
I'm finding getting up in the morning more and more difficult - and I'm no longer working.
I've been taking melatonin in the evening to help me get to sleep. I sleep for about 3 hours, but then wake up with my legs spasming and need to go to the restroom.
It takes me a while to get back to sleep, and then I sleep for another 3 hours, then wake up and go through it all again. After tossing around for another hour or so, I finally get some good sleep for a while, and I've been getting up later and later.

I used to get by on 5 hours of sleep when I was teaching. I stayed up late grading papers and lesson planning, and then got up early and was one of the first people in the school every morning. I'm so glad that I'm not trying to do that anymore!
Good luck with your decision.

08-03-2011, 01:32 PM
I thought a bout it a little and aksed my attoney friend, and told him I was using him as my attorney for the minute and was binding him to Attorney client privilege : ) He gave some good advise, he said I dont have to stop work to apply for ss but it would be best if my doctors can say I can't hold down a job while sitting down all day, because I'm considered a "baby" under SS terms as I'm not even close to 49 yet, althoug sometimes I feel 100.
I have a sleep study appointment next week, last night it was 4 am. and I was tossing and turning : ( Like you Marla, I take Melatonin some nights to sleep although I read that us Lupies shouldnt' take it because it revs up our immune system. Id rather take the chance on that and not those sleep meds, not yet anyway however I don't know how much I can take withuot any sleep. Thanks for the hugs and good vibes sonmak!