Go on disability or not....

[egello]

Hi everyone,

Since pcp this past christmas, I have been taking some time off of work. However, it seems like my manager is getting backed up with the work and needs me back soon or have to find someone else to do the work.

I am on prophylaxis and started taking hiv med three days ago. The only illness that I feel is from side effect of prophylaxis and the hiv med, besides that I haven't had any other OI since PCP,  and I will be going to an eye doctor for cmv diagnosis this wednesday.

I have the energy to do things, but get fatigued very fast. The side effect to the HIV med weirds me out, but I think i can manage. With my current low cd4, I am scared to death about catching other OI that I don't even like being outside all the much these days.

Now the question is, should I go on disability and not return to work? I am 30 and pretty much just started this job last year. The money is not the biggest concern because my partner makes enough and I am under his insurance. He is also thinking about getting a life insurance just incase something happens to him so that I will be covered and the mortgage still paid for.

The only reason why i would hate to not go back to work is good money earning skill that i can learn from this job and relaxed work environment. Having been into many things in my life, it will be nice to have a specific money earning skill which I never really had. Besides earning power, this job is not my passion in life. It is a good easy job however, with lots of time access to internet.

I am also an artist and love to cook and stay at home if I could. I also don't mind working.

What are your opinion? Go back to work or take this opportunity to quit my job, stay home, do my own things and take care of my health? I am afraid that when i go back to wokr, like before, we won't have time to cook, clean nor exercise.

Thanks

[thunter34]

If your current employer is aware of your health situation (which I am assuming since you have been taking time off for the PCP), I would speak to the employer about just reducing your hours some for awhile.  I would explain to your employer that you would like to stay, but are still in recovery and experiencing fatigue.  I say this because, as great as it is that your partner makes all this money etc and can help take care of you, you are always best to try to arm yourself to take care of yourself.    Also, there is a psychological and emotional benefit to be found in staying a part of the work world (in my opinion).  I also think having a bit of a routine and a sense of function helps keep the mind and body fit.  Helps keep you on your toes, so to speak. 

All this said, listen to your body and make your decision after an honest self-assessment of your health.  While I think there are all these potential benefits to staying on the job, there's no point if doing so over extends what you are realistically capable of.

I'm a little distracted at the moment. Hope this response helps some.

[Robert]

Hi egello.

I think it's just too soon to go back to work.  There are  others on here who've asked the same question.  One of our friends, recovering from PCP, went back to work after 6 months.  He lasted less than a month. It was just too soon and he got sick again. 

You say you got sick at Christmas?  So it hasn't even been a month.  You've got 5 t-cells?  You've just started HAART?   Despite how you feel now, PCP is really a debilitating illness. Taking a prophylaxis  is hard enough.  Adding HAART to the mix is really asking a lot. Remember your immune system is severly compromised.  It doesn't matter how stress-free your job is, it's still a job.

What thunter says about working is valid and very important.  But now it's just not the time to do it.  I wouldn't even do part-time. 

But if you must, do it at home.  Part time.

robert


 

[Miss Philicia]

Yeah, I'd agree with that.  Way too soon.  PCP is quite serious.  Doesn't your doctor say "no way" or something?  You're partner can make ends meet and insurance isn't an issue.  Disability won't be approved within 6 months anyway, so just take 6 months off and then return to that job if they will allow you to do that or then look for a new one if you're ready to return.  You're not destitute with no resources to turn to.

[J.R.E.]

You should probably look into this :

http://humancapital.doe.gov/elr/FMLA.htm

http://www.dol.gov/esa/whd/fmla/


Explore it with a lawyer if need be, and bring this to the attention of your Human resources department.


Ray

[ademas]

I agree with the "it's too soon to go back to work" crowd.
Your CD4 being what it is--add the recent bout with PCP and thrush (mentioned in your other thread), and possibly cmv--how many messages can the body send?  No wonder you're feeling fatigued!
I would say it's time to either apply for disability, or at least talk with your employer about taking an extended leave of absence.
What does your doctor say?

[bear60]

Unless I am mistaken....the application process for Social SecurityDisability is a long one. People have told me it takes 2 years now.  ( I also have been told that the benefits are retro active to the date you apply...so apply soon if you need to)  And that you have to have a lawyer help you and so forth. So, you really need to make a big commitment to getting disability.  It takes work and perseverance and and patience. 
Are you ready to do that? 
I am thinking you do not mean disability from your work.....or do you have a disability policy where you work?.

[Miss Philicia]

I was always told 6 months, though in NYC GMHC told everyone to ask for "HIV fast track" and it cut it down to 3-4 months.  The "2 year" issue you are thinking of is for Medicare enrollment.  Nobody will qualify for that until they've been on SSD for 2 years, no exception.  You will have to figure out how your medical care is handled during that period.  I will though add that AFAIK intake is handled by Social Security office on the state level so maybe this varies by state.  I'll be interested to see what others say that have endured the process.

The retro part can actually go back even before the date you first apply for it, but I forget the limit.  No, you do not need a lawyer unless you get turned down and you opt for an appeal, and I know some ASO's will link you up with a pro-bono lawyer for that.  Anyone going the Social Security disability route needs to get advice from a case manager first, and insist on someone who knows the issue.

Also, people should keep in mind that this is just for SSI/SSD and has NOTHING to do with any individual long term disability policy you may have with your workplace.

[bravebuddharich]

I'll play devil's advocate for a moment. I live on disability; our situations sound quite different, yet... for me, disability has been a blessing and a curse! I am trying to get off of it and can't - people keep telling me to work just part time, not understanding that I would lose my health care coverage, which is extensive, and I would not be able to afford at all if I went back to work. I am also wary when I read you depending too heavily on your partner, because that can change (not saying it will, only that it's better to be self-reliant, just in case). I think it's great to get the help if and when you need it, but be aware of what you might give up. I know I can't make ends meet on it, and have endless frustration as a result. I have tried several job training courses, and applied for some employment I would actually be able to do and enjoy, but no success yet.

I wish you luck, whatever you decide. Just think it all the way through, IMO.

Rich from Boston

[egello]

i only used to work 20 hours a week, so none of the benefit apply to me.

today, i went into work, and after an hour or two later, i had to leave, i was just too uncomfortable. It wasn't that i was sick with fever or was seriously ill, but my head was spinning, fatigued from sitting down and just couldn't handle the stress of having all those peopel around me.

[Nico]

Rich,
I hear you loud and clear.  As I said in another topic on the same subject, I was on short term for five months full pay, but needed (for me) to get back out to work.  Maybe you are in a different situation, but FMLA runs out after 13 weeks and then your employer can give you the boot.

I would then be on COBRA and can't afford it.  Your situation may provide extended health at low cost, but for most of us in the US, we are screwed.   No job, no good coverage.  I am sticking it out as long as possible.  It gives me a reason to not give in.

Everyone's situation is not the same as mine, but this is my two and 1/2 cents.

Cheers!
Roger

[Oceanbeach]

I think the most important thing is... do you feel well enough to return to work?  My situation was similar to yours but that was 10 years ago.  After PCP it took me almost two years to feel well enough to leave the house.  The first year on disability was better than any of the others because for the first year, there was state disability, which was almost enough to live on.

On the first month of the second year SSI kicked in and was about half of the state disability payment.  After two years, I began looking for work but, there was a two year gap in employment history and that in itself sets up a "red flag" to HR in any company.  I did get hired at one of those aftermarket auto parts companies as a sales manager but, had a problem with my meds and could not start work.

Now there is a ten year gap in employment, coupled with the loss of federal benefits (RWCA Title I) and at the current rate of SSI annual increases, it may take two more years to get up to $1000.00 per month.

Every day, living with HIV is a struggle and you experience that every day, we all do.  If you are up to continuing working, I would recommend you do so.  You may want to take a year off or a short term leave of absence and look for an opportunity which makes you happy and covers your needs.

After 10 years of job applications and HIV, I started volunteering and through my work with the Planning Counsil and the subcomittees, I finally realized I got my edge back, have been raising funds to open a company of my own and expect to do so this year.  I am going in direct competition with my former employer.  Have the best day
Michael

[egello]

peopel tell me to listen to my body, but i am not really understanding what my body is telling me.

i've never gone through anything like this before so i don't know whats going on, whats to watch out for, and how much i can actually push my body at this point.

[bear60]

egello...if I am not mistaken....people who have had PCP need to take up to ONE YEAR to recover...if not more.  When someone says listen to your body it means: if you are getting fatigued and cannot work at the level you were then perhaps it is too early to go back to work.
Quote you...."
today, i went into work, and after an hour or two later, i had to leave, i was just too uncomfortable. It wasn't that i was sick with fever or was seriously ill, but my head was spinning, fatigued from sitting down and just couldn't handle the stress of having all those peopel around me. "

What was your body telling you???

[egello]

but i keep feeling that i will be fine by next week from the symtoms. i just don't want to be a lazy person who is using this excuse to not have to go back to work. i always thought that unless you are literally sick in bed i should be going to school or work. i am able to drive to dr. appointment and go buy something at stores, its not like i am sick in bed. i am quite mobile even though i have moments of fatiguness and nausia.

also, i had my eye examined and the doctor does not believe that i have cmv, so thats good news.

what does it mean to fully recover from pcp? i feel like i am fully recovered,  but am I really?

its like hiv, people tell me that i have this deadly disease, but i don't feel it nor see it. argghhh.... whats this all about?

[RapidRod]

I received my SSI in 1 1/2 months. But I had just been released from the Hospital with over a 500,000.00 bill. All of this was filed by the hospital on my behalf. OSU medical center is top notch. I received my medicaid the day after I got out of the hospital. Most of problems people run into is having to much income, Dr's. not filling out the paperwork correctly with enough information. I do know people that has taken 3 years to get approved.

[Miss Philicia]

SSI comes pretty quick, it's SSD that takes longer if I recall correctly.  Did you apply for that as well?  I'm sure anything taking 3 years was first denied and then appealed.

[RapidRod]

That is almost the norm to get denied the first time. They don't like hearings and attorneys.

[marc11864]

Trying to get either SSI or SSD have been like a nightmare for me. Within 4 mos. after diagnosis my T-cells were 170 and my VL was 86,900. Enough of course for an AIDS diagnosis and coupled with mental health related issues I've had, you'd think that would be significant enough.

However, due to the fact that the only thing that I've experienced thus far was a case of thrush and physical exhaustion, SS turned me down on the initial application and the appeal even with a lawyer. And now, due to the overwhelming caseloads I'm told that I now must wait on the order of 18 months to have the case brought in front of a judge for determination of eligibility. This has been a very disheartening process for me as due to the HIV and MH issues, I've now been unemployed for almost 3 years which further exacerbates my condition. It REALLY pisses me off that, first I've been forced to pay in to the program since I was working on a farm at the age of 15 and have worked all but maybe two or three of those years. And second, they in no way allow you to exempt yourself from the program but don't actually avail you help when you need it!

Not to even mention the number of people I've known in my life whom I've watched fleece the government on this program. I'm no slacker, and I will go back to work eventually because I haven't done everything that I want to in my life yet. But I thought the SS was supposed to help in times like this.

It's been extremely frustrating and I know the accompanying stress has not helped my health any.

I guess what I am trying to offer is that no matter what way you go, disability is never a sure thing and it could be more trouble than it is worth. That said, I would still advise you to try at least for the time being as well as looking into the FLMA. The reality of this is also that there really is no such thing as short term disability as regards the SSA. Either you go on it, or you don't.

Sorry. Didn't mean to hijack but I just needed to vent.

[AlanBama]

I feel for you Marc.   I have some very good friends who NEED to be on SSD right now, but like you, have been rejected.  (one is my former partner of 14 years, who suffers from MAJOR mental illness issues, HIV-related dementia, etc.    One is a member of the forums, I won't name the name, but you know who you are honey)

Those of us who were "lucky" (a strange term to use) enough to be approved when we first applied (1995 for me) definitely feel your pain, and understand your anger.   You've paid into the system, you deserve to be taken care of.

This is another issue that many newly diagnosed people may not realize they may face at some point.

Best of luck to you, my friend.

Hugs,
Alan

[marc11864]

Thanks Alan. 

It is appreciated. I was just having a "moment". I've taken my anti-depressants (Music) and I'm feeling much better now 

[antibody]

take the disability. i did and it's doing wonders on my stress level. i took disability 3 months after starting Atripla. i just couldn't deal with the CNS side effects and sleep problems and continue to work. everything was stressing me out. i didn't have pcp but was dogged by depression and fatigue i couldn't keep up with my housework and my own errands let alone work a 9 hour shift 5 days a week. so in my opinion take the disability you've paid into it and that's exactly what it's for.