Aids & Working. To work or not to work

[Dale Parker]

Hey guys I need some advise.
If you read my last post "Having a crappy week" you know this week hasn't been going well.
Last night was pretty bad emotionally and I didn't sleep at all. Since I wasn't sleeping I got out of bed at 5:30AM decided that instead of feeling sorry for myself I should take the bull by the horns and be proactive in getting my finances straightened out.  
I called unemployment and found that my claim still wasn't settled and I could be facing  a 3 week wait for any future pay checks. Rents due today I don't have all the money. They want to evict me on Monday. I called my welfare social worker and found she was out of the office.  I called her replacement and am getting a cheque to cover my rent this month. Welfare paid me yesterday for the two months deductable that I had to pay for my drugs which will cover my back rent and my cable bill.
At last something is going right. Major stress relief.
  She also said that the disability board has found that I can be classified as disabled. When we were talking about my unemployment status I mentioned that I would love to get back to work and that I think that I can handle an easy to moderate level of work as long as I don't have a lot of people contact i.e. not being a cashier at Wallmart. I think that this raised her eyebrow.
     My doctor wrote a letter for unemployment saying that I could go "back to work on a limited bases as tolerated".  I don't think he is thrilled about me going back to work .  Pretty sure he did it only because I was constantly complaining about being board and broke all the time.
I have to go and see the social worker tomorrow and I know going back to work is going to come up.
I'm board and would love to get out of the house even more so when winter comes. Am I being an Idiot
Facts:
worked 9 1/2 years prior to being diagnosed and only had 10 days off: 3 for back problems, 5 for playing hooky and 2 where I was actually sick (nothing serious).
Was diagnosed 6 months ago. He figures I've been positive for 10 to 15 years.  CD4 count was 21 CD4 to CD8 ratio 0  Viral Load 500,00+
Last test result was CD4 159, CD4 to CD8 ratio was .02 and viral load was down to 750
Physically I feel pretty good to really good.
Mentally (except for the last week which has been pretty bad) I feel good and people say that I am handling the aids issue really well.
I only had minor side effects (major tiredness) from the drugs. Kaletra and Truvada but they are gone now.
Doctor says I have minor COPD and mood swings.
If I was picky about the job and got one with minor people contact, somewhat mentally taxing (I like a bit of pressure) and above all found something that I loved to do. Do you think I should take it or learn to relax for another year and let my body build up my immune system?
Any thoughts would be greatly appreciated.

[skeebo1969]

  Dale,

   It's really up to you.  If you feel you can work give it a stab and if you feel you can't handle it then you shouldn't.  It would help with the boredom for sure...  along with the isolation that comes from it.

   For myself, I had to take some time off.  I was not well enough early on to work, both from a physical and mental stand point.  I was never one of those guys who could just work to get my mind off things. 

   I know you mentioned what your doctor said about being able to work on a limited basis as tolerated, but have you asked him what he thinks you should do?

[Inchlingblue]

Since it seems you will be covered financially as far as your basic expenses (since you got your disability approval and unemployment), if I were you I'd start out with volunteering somewhere, assuming that volunteering won't cause you to lose disability.

It's a way to get your foot in the water without the total commitment that a real job would entail.  Eventually you can look for employment if you want but to me it makes more sense to volunteer for now. Once you were to start work again, doesn't that mean you'd lose disability and maybe even the subsidized housing that you have?

[GNYC09]

Hi, I don't know much about the legalities surrounding being classified as disabled but, if boredom is the sole or main reason you'd like to return to work, why not volunteer at a charity?  I myself am dying to feel healthy enough to volunteer at my local GMHC and/or charity for senior citizens.  There are also lots of virtual (online) volunteer opportunities that don't require lots of face time.  Just a thought...
Good luck,
G

[Dale Parker]

Personally I only know two guys with HIV. One works and the other doesn't.  I don't know their numbers but they have been + for 10 + years.
I think that my doctor would really prefer that I stay home and knit socks.  I think that this weeks emotional stint is because I don't have a back up plan for housing and pay check. It's all being handled by others which bother me. I'm not in control. Three things that you don't mess with are my housing, finances or loved ones.
  I do have a few minor concerns:
1) Been told right from the very start that I have been handling the Aids/ death issue really well.  Could there be a delayed reaction?
2) They say the first year on the meds can be the most dangerous for OI's.  I want to stay healthy and don't want to jeopardize it.
3) I also don't want to get a job and have to quit a few weeks / months after starting due to health reasons.  I've been told the disability package that I'll be on is pretty good.  You can jump on and off it as if it were a city bus. I just don't feel it's fair to the company..

[skeebo1969]

  Dale, I think what GNY and Itching both brought up are excellent ideas....  Even if it was just for a few hours each week it would atleast get you out of the house and allow you to see what you are and are not capable of...

[Dale Parker]

Thanks.  All good points.  Do you think I should wait until my CD4's are up to the 250 or above mark.  From what I can see my excellent health is pretty rare for my counts. Most guys have at least PCP a few times after going below the 180 mark.  Never had any thing wrong other than shingles and skin rash. I really don't want to tempt any other OI's.
Forgot to mention:
disability I can go on and off as required
Subsizized housing will vary with my income.  My unit has a "Market Price" Rent will always be 1/3rd of my take home.  Max will be when it reaches market price. If my income lowers rent will lower.

[skeebo1969]

 It's noble of you to think of what's fair for the company, but during this time you need to do what is best for you.  I don't know so much that there is a delayed reaction to your diagnosis per say, but it can be a rollercoaster of sorts.... especially during the first year after diagnosis.  Let's face it there is a lot on our plate to accept that first year, from not knowing what to expect, not knowing what kind of doctor to see, who will accept us or will we be accepted, to work or not work....  shit it's a lot, but in time we adjust..  It just becomes normal in some regards, just with some glitches along the way....  but hey that's how life is and none of us were ever guaranteed to live to 100 with a clean bill of health to boot!

 If you have concerns regarding your health ask your doctor and even post them here.  There really are no guidelines on what you should do at this point.  It really all depends on how you feel.  There is one guy I know of who frequents the boards and he only missed 3 days of works after getting diagnosed with Cd4's below 100...  I , on the otherhand, fell apart after just being diagnosed with an initial Cd4 count of 469...  

  I would also like to add that if I had the benefit package that you have that enables you to stay home, I would....  Hell ya with football season about to start who has time for work anyways.

  I still like  GNY's and Itching's ideas on perhaps volunteering....  you could use it as a gauge of what exactly your capable of energy wise.

[Dale Parker]

Hey Skeebo:  I think I might go for the volunteer thing like Itching and GNY suggest. 
Never been into watching sports on TV.  May be I should try it. After all I hear that footballers have tight ends.  Haven't had one of those in a very long time.

[skeebo1969]

Hey Skeebo:  I think I might go for the volunteer thing like Itching and GNY suggest. 
Never been into watching sports on TV.  May be I should try it. After all I hear that footballers have tight ends.  Haven't had one of those in a very long time.

  they also got these things called the Dallas cheerleaders.

[Dale Parker]

are they male cheerleaders??

[skeebo1969]

  The male cheerleader is the fat guy with the headset on, often referred to as the head coach.  You may want to stick with the tightend position.  Perhaps Dallas's own tightend Jason Witten will be more to your liking....

  I hope Queen see's this post.  Your Cowboys are gonna tank it big time this year... they suck!

  Sorry for the slight hijack Dale, just had to throw that in there while I had the chance.

[Dale Parker]

zingers OK by me.  Hopefully Jason is not the guy with the headset.

I been up for 31 1/2 hours now.  Going for a nap.  God knows I cannot miss any beauty sleep. Every second counts. Shit late with my pills.
Thanks guys.

[AlanBama]

Just a suggestion from an old guy:

Disability is nothing to strive for.   If you are able to work, work.  Even though I am disabled, I still work part-time and earn the maximum allowable within SS monthly limits.   In looking back, I made one of the biggest mistakes of my life in 1997....I had been off work on "leave of absence" and already filed for SSD in March of 1995.   (in those days AIDS was a death sentence, I had been very ill with several O.I.'s and went along, working a demanding job as a lead auditor for the State of GA, with 0-10 T cells for several years).  My doctor had to INSIST that I filed disability, and even then, I resisted it with all my heart and soul.  I was afraid in 1997 -- we had only had one year of the protease drugs, and I wasn't sure if I could hold up.   In hindsight, I could have.  It was a State Job.   40 hrs a week, very rarely any overtime.  A few years later, people that worked my job were allowed to telecommute from home (something I was denied in 1995-1997).   If I had returned to work in 1997, I would now have almost 25 years of service with the State Government, have excellent health insurance, and a retirement plan.

As it stands, I am on ADAP, in the donut hole with Medicare Part D, and basically have to rely on social agencies for assitance to get any drugs that I need.   I despise it.

Just something to think about.......

Alan

[GNYC09]

The male cheerleader is the fat guy with the headset on, often referred to as the head coach. 

ha-ha!  good one!

[Dale Parker]

Hey Alan:  I tend to agree with you but I checked your stats. I'm only a year younger.  I don't have a pension plan or RRSP. In 2 weeks I will have been laid off for 1 year. I think that the main reason they push provincial disability on HIV+ people is because all of the drugs are 100% covered. I will also get dental and eyeglass coverage. Once on a monthly payment I will get $1380. You can earn money on it.  If it's government money I.E. federal disability payments (which I have applied for) they get deducted 100% from the provincial.  Any private sector wages are only deducted at 50% (if I get a job paying $400 a month they only take $200 off my disability payment and I get to keep the other $200= $1580.  I believe there is a limit on it earnings wise. I will find that out tomorrow. If I got a great job that exceeded the earnings limit I still get the benefits. If for some reason I can't keep a regular job I can hop on and off the plan really easily, so I'm told.
Been doing a lot of reading and soul searching on my work ethics and the taking of handouts (either personal or government.  I know it's a bad term). I hate taking but think I have to learn to accept it. I think maybe the guys are right.  I should learn to accept what is given me and pay back by working in a volunteer position.
  Due to circumstances beyond my control (my dad's government career and the cold war) I was always fairly closeted. He would have been fired on the spot if I was ever seen in a gay bar or compromising situation. The RCMP often staked out the house and followed us as kids and teens. It transferred over to my working career meaning workaholic.   I'm butch I hunt LOL.    I worked long and hard. I didn't take any sick time and almost never took a vacation (ususally an extra day on a long weekend). Although I only have a high school diploma and a few university adult continuing education courses I earned more than most of my university schooled friends and got promoted over university educated people into jobs requiring a university degree.
I think the guys are right I need to do a big change in both my life and thinking. I need to  learn to take it easy and give back what I can.  It's going to be really hard for me but I think it needs to be done.

[Assurbanipal]

3+ years ago when I came out of the hospital I was really anxious to get off disability and back to work part time.  So pretty much after a couple of weeks off the oxygen support, I was back 20 hours a week.  My doctor said she was usually in favor of working but that she thought it was too fast.

In retrospect, waiting another month would probably have been better.  

As others have suggested, why not volunteer for a month or two to see how it feels first?  

[Inchlingblue]

I think when discussing the merits or drawbacks of disability we have to keep in mind that the OP is in Canada, where disability rules, as most other things, tend to be more reasonable, allowing the recipient to have more flexibility with their lives.

Here in the good ol' USA, it's more of an all or nothing situation (with very little leeway). If Dale is able to go on an off of it and there is a sliding scale with earnings as he describes and he still gets meds regardless, etc etc., it sounds like quite a compassionate and humane system.

[AlanBama]

Yes, now that I realize Dale is in Canada, I retract my entire post.   The system is so totally different from the US, there is no comparison.

So yes, Dale, I think you do need to take the time and disability you've earned, and do some volunteer work.   When I first attempted to 'do something' after being disabled for so long, I volunteered at a hospital, in the telemetry unit.  It was very rewarding work.

Hugs,

Alan

[Inchlingblue]

Yes, now that I realize Dale is in Canada, I retract my entire post.   The system is so totally different from the US, there is no comparison.
 

Your post had some very good and valuable advice for those considering disability in the US so it's good you posted it.

Wouldn't it be great if the system here was as good as the Canadian one?

[Dale Parker]

Thanks for all the great advise.  The last week has been a real emotional rollercoaster ride for me. All of your post have helped me a ton. Not only have they helped in figuring out what to do but have been a great emotional support.
Thanks again.   You all deserve a big hug and pat on the back.
Dale