[Jirel]

I was at the doctor's yesterday and asked about how you know when to go on disability when you don't have organ involvement. I know we've had several threads on it and thought you'all might be interested in her reply.

Basically, she said that when you spend all your time either working or resting from work or being sick and taking care of yourself than its time to go on disability.

I told her I wondered if she would think me lazy if I went the disability route and she was VEHEMENT that no one at the clinic would think that. It all helped a lot although I still haven't made a final decision. I do know that I do virtually nothing except my work. My house looks terrible and I have problems keeping the cats in cat litter because its a special trip. I used to take care of a garden with over 50 roses, was active in the local rose society and would twice a year load the car up with 15 bags of mulch to sread over the entire garden, paint my rooms in the house and even laid some linoleum in it. Now I'm in a townhome with no yard responsibilities and just got rid of the 11 full sized roses I had in the back. I never go anywhere and I limit my weekly fun to having friends over twice a week. (The understand about the Lupus and if I'm feeling bad, leave early.)

Sorry, I wandered off the main idea which was to let you'all know about her standards for disability for those of us with no organ involvement. Thought some people might be interested.

 

[Postie]

Hi Jirel

I don't have lupus as a diagnosis as of yet but I have a diagnosis of CFS. I am on disability. I asked my specialist how will I know when it's time that I can't work anymore and he said you will know. Either you can work or you can't work. So that was about 1 or 2 years before I went on disability. At that point in time, I just didn't understand how you know when it's time to quit your job.

Well, when I did have to quit my job, then I understood how a person knows when it's ready to quit. I was only a school crossing guard but I was having a very hard time. I would have to be in bed at 7:30 at night. I was so exhausted. Then as each year went on, the heat started affecting me worse. Also before, I would be totally exhausted on Saturdays but Sundays I would feel better but then go back to work and feel bad.

So it got to the point where even Sundays I was not recovering from exhaustion and that's how I knew it was time to quit. Hope this helps so you can make more of a decision.

CindyLou

 

[Maia]

I think that's an excellent explanation, and even better it sounds as if you will have your doctor's full support if you end up knowing it's time to go for disability. I would have to say that's pretty much how I knew it was time for me... I was working and unable to do anything else but work and rest and then towards the end I was actually truly unable to do ANYTHING for long periods of time other than rest.

 

[lauralee77]

I don't have any organ damage with my lupus, but I know how crappy I feel and just getting in the car and going to the store can wear you out. You do what is right for your body because working is just going to make your lupus flares worse. I'm sorry to hear you are having to make that decision, but it's probably for the best. ansy:

 

[Katharine]

Thanks for posting that Jirel,

I think we often feel so guilty about having to go that route. I know that my doctors didn't force me to stop working at first because they knew how hard it is here for self employed people who stop work due to illness but they eventually put their collective "feet" down and said it was time to give it a good long break. I now work a very reduced schedule which is only possible because most of it is at home and I can work my own hours. If it was a normal job that involved regular hours and things like getting up early every day, I know I still couldn't do it.

Katharine

 

[macfamily53]

Wow that sure is a good quesyon really.When i was working i was working like 46 hours being a janitor at a grade school .I for like three years been basically dragging myself to work and home and cooking supper and doing laiundry also If that wasnt enough i took my kids to school and picked them up afterwards.I never thought i would have to or be quiting my job and trying to go onto ssdi.I decided i would see if i can get ssdi because i had so much fatigue. When i first went to my gp she said she thought i would not want to quit work and go on ssdi because she did not feel i was in that bad of shape .Well i decided after talking to my hubby and quit my job abd then applied for ssdi and it was the best decision i ever made i have to say.Good luck with making your descion jirel.(((hugs)))

Tammy

 

[Douglas]

Two fine descriptions

I find both Jirel and CindyLou's descriptions excellent: "when you spend all your time either working or resting from work or being sick and taking care of yourself than its time to go on disability" and "I asked my specialist how will I know when it's time that I can't work anymore and he said you will know. Either you can work or you can't work". For me it took my wife to say I should pull the plug on my 35 year vocation with the memorable words "if you don't, you won't live to retire." Thank God for other people who can save me from my own stupidity.
Douglas+

 

[Jirel]

Well, I think I'm in until at least June when the new disability rules go into effect.

 

[erenae1974]

I have been really considering this option as well. I'm just starting to look into it. What new rules are going into effect in June?

 

[Raglet]

someone's doctor said

when you spend all your time either working or resting from work or being sick and taking care of yourself than its time to go on disability

Well, that pretty much describes my life, but no it's not time for me to go on disability. I love my job, I could never stop working no matter what. I don't work full time, but I will be working for every last little second that I can. Giving up work altogther makes me shudder.

What I am really saying here is that we are all different. Perhaps my life wouldn't suit some, but I love it and don't plan to change it anytime soon. I spend a lot of time recovering from work, but I guess I have just accepted that is how it is for me.

There is no one size fits all in terms of when or even if there is a time to give up working, it is a very unique thing, and we all have our own ways of dealing with it.

have a great day

raglet

 

[Jirel]

Aww - but YOU are able to work part time. I am stuck working full time. I've been told there were no part time positions, but even it there was - all I would be doing is bringing down the amount of money I will get when I go on disability, and I know that I WILL be on disability at some point.

Besides, you may be at the point where it would be better for your health if you went on disability but you aren't doing it because you love your job.

 

[sunflowergirl2]

I don't have organ involvement either, but the joint pain and fatigue are debilitating. Recently approved for disability. It's a blessing and a curse. Relieved that I don't have to go to work or be threatened with being fired, because I called in sick too much. It's been an adjustment, but definitely for the better! Cathy

 

[Raglet]

Jirel, if you are responding to me, please don't pass judgements about the decisions i make for my own life. I promise never to do that to you.

All I am saying is that we are all different, and we all use our own personalities and lives to make our own decisions.

I have never worked full time in my entire life, and never intend to. And I am a single parent, so there is not much money in the kitty.

I have total trust that we will all make the best possible decisions for ourselves because we all know our own situations best.

My doctors tell me to keep working as long as I can, as the mental stimulation is good for me, but for others this just may not be possible.


Raglet

 

[rwb200]

My wife stopped working about five years ago now.
She was at a point where she would go to work and at lunch would go home and take a nap.
Her coworkers would call her when her lunch was about done and tell her it was time to come back.
When she got off she went straight to bed when she came home.

In three months time she had been in the hospital three times and was getting worse not better.

We talked about it at that time and I asked her to stop working. She did and was able to get disability pretty fast.

When she stopped working her health improved some and the Hospital visits stopped.
After a couple of years disability decided to reevaluate her. This time she was denied and the reason they gave was she is able to do sedentary work like answer a phone.
They used as evidence that she was able to answer the phone when they called her and was able to understand there questions and answer them.

We talked about it and decided that she would not go back to work. In our opinion she would be right back where she had been before.
We talked to all of her doctors and they all agreed she could not work an dit would be very harmful for her if they did.

We tried to fight the decesion for awhile then just dropped it.
The constant agrevation of fighting it was making her worse.
It was not worth it in our case so we dropped it.

Today she still feels bad because she does not work. She feels as if she does not do her part.
I disagree with this completely.
When I come home the house is cleaned and a meal is cooking. She is doing better and does not have to work all of the time.
She has went from taking 18 diferent medications every day to taking five every day.
Doctors visits are down to a minimum not three times a week like we had for awhile.
Tests are done on a regular basis not a weekly basis.

We have not meet our out of pocket maximum on health and Medication insurance in years.
We save more on medical then she ever made. Now who can say that is not doing its part.

To me it is worth it to just have her home when I get home and have her feeling better.

This is a big decesion with alot that goes into it. There is no one answer that is right for all. Each person needs to look at there own case and decide what is best for them.

 

[ALWIN]

Hi Jirel

It is a tricky one isn't it?

I gave up working full-time shifts and my health improved.

So that means I am fit for work!

Do I go back to my old full-time work then? I think not. Why should I put myself and my family back where we started?

However, there is not a cat in h----chance of me being able to make any claims. And in my case that is probably quite right. I am at the mild end of the severity spectrum and very grateful too.

Doing a 'mental' and becoming something I enjoy, even though it involves a lot a physical labour and being outside has helped me to become more healthy in ways that matter to me. My money does little for the household budget because I do few hours, earn way below the tax threshold, and do no paid work what ever during the winter months.

If I was in your position I would be worried because everybody needs an income. My husband does that for me. If you are ready and it is what you want to do and you can get financial help you go for it.

The reason I took up a part-time self-employed job I honestly enjoy is BECAUSE I felt I might not be able to work at all in the future, so I wanted to have a stab at doing what I wanted for the first time in my life, for the possible remainder of my working life. I was lucky in that what i wanted to do (gardening) was easy to set up in alone and easy to do as and when I felt fit.

If life drops anything less physically demanding at my feet that is part-time and I think it is right for me I will probably give it a go. When I am ready. Problem is people think you will not stay if you apply for jobs that don't match old qualifications. Silly - old qualifications mean nothing if you have not used them for a while or you have a bad memory. Can you imagine even considering going back to nursing after being out of real nursing for over a decade and having a bad memory - I could tell the wrong person they were dying or anything. Nightmare. Even the machines look funny to me.

And the care home work I did in the latter years was easily as physically demanding as gardening ... only dirtier, stressful, and it left me open to more bugs than you could shake a snotty stick at. And the shifts were 12 hours long. Crazy.

I think with this type of problem you have to act on what is going on for you at the present.

If I do too much I spend hours in bed and i suffer - but at least I can do that without worrying about letting work mates down or appearing to be lazy. Nobody ever said that to me because I had no time off work, but I had no life outside of work either because i spent it all in bed.

And, you know, you are replaced and forgotten soon after you leave employment. Nobody is indespensible.

I made the right choice for me, but i will never get a pension, which i dearly regret as i start to see my old friends approaching the 25 years service mark. I do wish i had managed to get that far before leaving a job with a good pension.

I hope you get where you need to be soon.

Take care.

 

[Jirel]

Jirel, if you are responding to me, please don't pass judgements about the decisions i make for my own life. I promise never to do that to you.

All I am saying is that we are all different, and we all use our own personalities and lives to make our own decisions.

I have never worked full time in my entire life, and never intend to. And I am a single parent, so there is not much money in the kitty.

I have total trust that we will all make the best possible decisions for ourselves because we all know our own situations best.

My doctors tell me to keep working as long as I can, as the mental stimulation is good for me, but for others this just may not be possible.


Raglet

Raglet, I didn't mean to be passing any kind of judgement. I just meant that it was nice that you could work part time. Personally, if I had your problems I KNOW I wouldn't be working. I'm not sure I could hold up at all with all you have on your hands let alone post things that are humorous to other people. I admire your ability to cope.

I was having problems and that made my post too abrupt. I'm sorry.

 

[Raglet]

sorry Jirel, I think it is all the extra iv steroids making me touchy and reactive - so please just ignore my post.

actually I was coming back to quietly delete the post in the hopes you hadn't seen it. Please don't take any notice of me, just being unnecessarily grumpy. No apologies needed

your friend

Raglet

 

[peonyprincess]

Jirel,

My doctor told me that when I take more pills than my patients and that I am sicker than the patients that I am taking care of, then I should file for disability. Needless to say, I filed shortly after that visit.


"Retired"
Nancy

 

[Jirel]

No problems Raglet, I was just worried I had been too abrupt. We all have the same problems.

Nancy - I think I can qualify on that. I take 19 in the morning, 8 in the afternoon and 6 at night. One thing I'm hoping is that if I quit work I can be "healthier" without so many pills. At least I should have the energy to concentrate on the correct food and some gentle exercise - once I get caught up on the housework.

 

[KarolH]

I am on SSD and I can tell you in my humble opinion that your body will let you know when you can no longer work.

It is a tough pill to swallow but when your sick and you start calling out from work more often then you go in...................well for me it was a no brainer.

I wish you luck in your decision to work or not work but do not think people will think your lazy. If they do then it is their opinion but I would not worry about it.