to work or not to work

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Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/4/2007 10:41 PM (GMT -6)   
Hey all,
 
I don't usually have problems making a decision about anything in my life.  But to night and all this week, I have been battling with myself over the question of appling for SSDI. Here is what I need to know from you. 
 
How many of you still work?  If you are no longer working, how did you decide it was time to give it up?  Right now, I just need an outside look into my life.
 
I only work part-time right now.  And I only work 3-4 days a week.  I only put in about 3 hours a day when I do work.  I am so tired when I get home that I can't clean my house and I am having a hard time taking care of my kids.  I have been doing my shots like I am suppose to, but all of my symptoms have returned and my pain levels have shot through the roof again. Jay (my husband) and the few people I have talked to tell me that it's time I give up my job and apply for SSDI.
 
Am I being selfish by working?  Should I feel guilty about going to work?  I feel like I am letting my kids down and not giving them all of me and my attention.  Should I do what everyone is telling me to do, and put the family and my health before my job and just give it up?
 
I really need help right now.  My finacial situation is bad, and I just can't seem to think clearly on this subject cuz it's affecting me.  An objective oppinion would be greatly appreciated.
 
Love,
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/5/2007 5:13 AM (GMT -6)   
I quit work when it became all that I could manage to do with my life...go to work, come home, crash into bed, get up, go to work.  Sounds like that's the situation you are in.
 
Unfortunately, the way the SSDI works, you probably should have applied long ago, when you were working more hours, as how much you will eventually get (assuming they approve your application) is based on how much income you had in your last 3 years of working.
 
At any rate, before you quit, consider these things:
 
Have you worked long enough (and paid into the social security system) to even be eligible to apply for SSDI?  You can simply call your local social security office, give them your name and social security number, and ask.  They'll be able to tell you whether you're eligible, and approximately how much you might expect (make sure to tell them you have minor children, as they might get some $$ too.)
 
Also, you mentioned financial problems...if you and your family are low-income (VERY low!) .. you might be eligible instead for SSI..supplemental security income. You can also ask about that when you call the social security office.
 
The injectable meds (you didn't mention which one you're on, but it doesn't matter) aren't designed to help with symptom relief.  You could ask your doctor about getting on some meds for fatigue, pain, and other symptoms, which you'd take in addition to the disease-modifying drug you're on.
 
Many folks who struggle with MS related symptoms find their symptoms greatly reduce and their health improves significantly when they're not under the stress of having to maintain a job.  Yes, the finances certainly are an issue...but depending on your husband's employment situation, you may be able to find a way to work that out without continuing to jeopardize your health.
 
Take care.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/5/2007 6:47 AM (GMT -6)   

Uppity,

Thanks for the info.  I have only worked part time for a year now, and just about every job before this one was a full time job.  My husband and I had descussed my work before I left my last job and both felt that it was better for the kids for me to be home more than at work seeing as how his hours were crazy and all over the place.  My job title says part time but most of the year starting from this week clear into Feburary I will end up working 30 hours a week or more.

about a year ago, I got one of those statements from Social Security and it said that I will qualify for either program.  As for the income, we are stuck in that place that money is tight, but we don't qualify for welfare assisstance for anything as long as I am working. 

Right now, I am having more of an issue with my pride and self-esteem.  I am afraid to death to have to tell people that I can't work anymore.  It feels like I am a failure at life if I can't work.  And I'm not sure how to deal with it.  Any advice on that one?

Heather

 


Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 11/5/2007 10:32 AM (GMT -6)   
Nothing to be ashamed of if you cant work...I held on until they wanted me out..I gave it my all and i knew my body couldnt handle it any more.So I held my head up walked out (could a little better then) went to the social security office filled my papers and it went surprisingly fast for me.I found out the hard way.................You give everything you have to a job BUT it is your family who is there for you.I wasnt any kind of professional or anything.But there were days when I had no business going in but i did what I had to do and practically crawled out.As I found out some employers dont want less than perfect bodies working for them.....Think about it--Its not easy the stress off your nervous system is a good thing....A regular paycheck is too. You know your body better than anybody.Its not easy being young and getting a social security check. But you have to do what is right for you...pokey79 Best ofluck with your decision!!
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/5/2007 11:06 AM (GMT -6)   

I can't help much over the "shame about not working" issue....as that's really a "societal" issue, not specific to you.  We've all gotten caught up in the "what do you do for a living?" craze..and if your answer is, "I'm a stay-at-home mom", that seems not acceptable.

There is NO shame in not working, particularly not working because of disability (which obviously is NOT of your doing!). And there should be a LOT of pride in taking care of kids, taking care of a home, doing those family-oriented things. 

You've already identified the issues -- your husband's job requires him to work odd hours, sometimes...so kids need one parent available.  Your disability is such that working outside the home AND inside the home isn't possible, and working INSIDE the home seems the better option, for both the family and you (presumably if you really didn't WANT to do housework and child rearing, you could hire that -- hypothetically, of course, as it takes $$ and most of us don't have much $$!).  Your husband seems supportive of you staying home, so it ought not be a problem there.

So yes, staying at home should be considered a choice, and a positive choice for you and your family.  If you continue to feel guilty, your family will feel guilty, and that won't be good.  "Mommy is going to stay home and be more available for everyone. Won't that be fun??" might be a good thing to keep saying to yourself!  :)

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 11/5/2007 11:17 PM (GMT -6)   

Hey Heather,

You certainly have a lot on your plate.  I am really sorry.  I am still working and for that I am very grateful.  I am grateful because I like to work.  I really really like my job ( I am a 5th grade teacher ).  It is a tough job but it is extremely rewarding.  I am grateful for everyday that I get to work.  I doubt I will get to work for as long as I would like.

When I am unable to work any longer I will feel no shame.  I am fighting the good fight and it sound like you are too.  Living with an incurable and chronic disease can be a full time job in itself.  Afford yourself that dignity.  You are doing the best you can.  If you need to stop working, then stop working and concentrate on your family and yourself.

I agree with Uppitycats.  We have become a society that holds too much personal esteem in what we do for a living.  What you do for a living is your job, it is not who you are and doesn't make you more or less valuable as a person.  You are valuable because you are you.  Think about all of your identities ( mom, wife, sister, daughter, friend, etc).  That is who you are.

Good luck!

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/6/2007 6:48 PM (GMT -6)   
Well,
 
I called the 800 number for Social Security, and now I am so upset I can't hardly stand it.  I called to ask a few questions about how the system works, and this man never answered my questions.  He was so rude over the phone that I was in tears by the time I hung up.  I have decided that I was going to set up an appointment to have my questions answered.  I go to the local office on the 19th of November to talk to an agent about Disablity.  I have decided to go with it and see where I end up.  It's all I can do now.
 
I was so tired today that the minute my youngest son took his nap, I was out like a light on the couch.  I did find some energy to a little house work.  I am begining to think that I am going down the right road right now.  I felt better when I didn't have to work today.  I am keeping my fingers crossed that this works out for the best.
 
Thank you all for making me feel better.  I don't think that I could have made that phone call with out someone on the outside showing me that I wasn't just being a baby about all of this.
 
Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/7/2007 5:50 AM (GMT -6)   

I'm so sorry you had such a bad experience with the 800 number.  I've always found it best to "go local", even though that means for me that I have to head into the "next town over", about 45 minutes away, to talk with someone (I can reach them by phone as well).  They're much more personable and reachable.

In the meantime you could look on the social security web site, and even download the form you'll eventually have to fill out.  It'll give you some idea of the kinds of information you'll need when you go to talk to the folks in person, and some other ideas and help.

Don't hesitate to ask about filing and all, when you get to that point.  I've tried to help a lot of folks do this (that's one of the things I used to do when I was a "working girl" :)  ) and some of the others here have experience with this too.

Good luck with your visit! Let us know how it goes.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/7/2007 6:52 AM (GMT -6)   
Hey Heather

I'm a stay at home mom and i can tell u it's no piece of cake. I used to work a full time job plus. 50 -60 hours a week is not conducive to a family life, so when the oppertunity to come home and stay home came up i jumped at it! It has been nothing short of miraculous. about a year after coming home i started having my probs that led me here and i was sooooo thankful that i was not working then!! I have to give u and the others here who work u'r kudos! Bravo to u for trying to hang in there and struggle with all this and u'r family at once. Simply put tho, it's a very very difficult position to be in...if not impossible at times. U are struggling so much now and u need to give u'rself what is needed to not only help u, but u'r family too. Don't feel at all quilty for doing that. It may be the only way u can begin to get better here. U'r family will certainly love u being more avail for them. Not everyone can afford to stay home, so it's not a norm for lots of people, but if u need to and can use the funds u've been paying in to do so, do it!! I used to be a slave to the belief that making enuf money was going to answer all my family's needs. We could do what we wanted and go where we wanted...but when would we do that??? I now believe that QUALITY is derived from QUANTITY where my family is concerned....meaning my time is better spent on my family. Get to that appt and get this process on the ball. Do as Uppity suggested...download the materials u need and be reviewing them if not preparing forms and gathering needed paperwork...and take good care of u. Be prepared, disability can take a long time to get approved. I think i read here once before where the avg was about 2 years, but hang in there and don't quit. U know u'r needs and be sure u do what u can to meet them. Take good care friend and let us know how this goes for u.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


HeideBee
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/11/2007 10:35 AM (GMT -6)   
I left my full time job almost a year ago after pushing myself too far. I was hardly able to get out of bed, my body pretty well shut down on me and I was in and out of the hospital for about 2 months. Don't push yourself too hard.
I do work about 8 hours/week right now. Most of it is at home so I am able to do program planning from my bed if I need to that day. I am close friends with my employer and have a flexible schedule for my on-site work. Her sister has MS so she understands if I'm okay one day and not the next.
I personally am applying for disability support. I am a single mother, and it's really the only option I have right now.
I also do some work from home stuff to pull in some extra money. This works well for me because no one can see if I'm making my business calls from bed with a heating pad and wearing leg warmers in August so my legs don't freeze!
If you don't take care of yourself, you won't be able to care for your children. Believe me I know how hard it is to put yourself first! I'm very stubborn and it took 2 months of major illness to wake me up.
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