Stopping Medications to find work?

[notsomuch]

 I've been diagnosed with HIV since 08/13, I started on Complera which made me extremely sick, switched to Stribuild which seems to have less negative effects.

My levels are very low or undetectable but my medications keep me sick, nausea, vomiting, weakness, lethargy, severe migraines. To boot I'm on Lithium, Neurtonin and nausea medications and deep leg vein issues. Alprazolam for panic disorder, mood/manic etc.

My original SSDI was denied, my secondary appeals application is in process but I foresee them denying me again.  Since I'm so close to destitution I am in jeopardy of losing my apartment and even a place to keep the Marinol cold which helps me to eat.

I've been considering just stopping the HIV medications in hope that I would feel better to go out and try to find work?  The way it is while on my medications just doing my laundry is an all day affair so I can't imagine doing a 40 hour work week while on the medications.

I know by stopping the medications ultimately I will get sicker but I find myself in a desperate financial situation which may require me to try to find work even though I was fired from my last job for being sick too much.

I have written senators, have an advocate for my SSDI yet they keep dragging their feet and my bills and rent keep piling up and are postponed due to my inability to work without becoming fatigued.

Is stopping my medications a good idea until I can at least find a job and try to stabilize my financial situation or stay on the medications and risk being denied by SSDI a 2nd time thus throwing me into deeper financial chaos?

I'm not even sure if stopping the medications would allow me to feel better or not, has anyone been in this type of situation before?

[AusShep]

I see you're on Lithium.  Do you think it's possible you're having a bi-polar depressive swing? 

Much of what you're saying sounds like depression.  My partner is on bi-polar medications, mostly for mania, and he's recently had a depressive swing that he wasn't aware of.  He kept asking me "are you sure I seem depressed?"  After getting him to talk with his Dr he's started an SSRI and is feeling much better.  The cost is under $5 a month, since he's on a generic, so don't let cost scare you off if you think you could be suffering from depression.

I'd also recommend talking your doctor about your side effects and get his take on it before deciding that Stribild is the problem and stopping on your own.


 

[zach]

nah man, you wont feel any better stopping your meds. you'll get worse, maybe fast. maybe worse than you can imagine or bargain for. and your immune system wont be naive to your current meds, and possibly to whole class of meds, you may develop resistance. talk to your doctor about a med change for less side effects. but do it with a plan, under supervision.

your ss appeal, keep the representation, having an advocate seems to be the way you're supposed to play the game. there is a reason they drag their feet. its almost policy that the initial application is denied. on the plus side, if/when you do get it, the initial payment will include back pay starting at the date of your first application. the advocate will be paid out of that settlement. capped at 25% or i think about $6000, it read whichever is the greater value of the initial payment. they will not get motivated to act, until their payout has reached maximum. if you "only" have HIV, the odds are not in your favor. if you have full blown AIDS, those odds go up, but these days not as much. you will not get it based solely on side effects of meds. OIs and AIDS diagnosis are just about required these days.

[BT65]

....Of course more people get approved for disability for mental reasons. 

Were I you, I would e-mail the White House.  Sound crazier than a shit house rat in your e-mail, continue with advocacy, writing to congress people, and see if anything happens.  The White House has helped me before. 

Going for disability on physical is difficult, but not impossible.  But don't let yourself get to near death just for disability, you may not make it back to health.  Work with your doctors on figuring out which med, or med combination, is giving all these side effects. 

Is one doctor prescribing all these meds, or two?  If two, make sure they're in touch with each other to compare meds, side effects etc.  It's counter-productive when you have two doctors who aren't in touch with each other.

Good luck, keep up the fight!

Betty

[mecch]

I've been diagnosed with HIV since 08/13, I started on Complera which made me extremely sick, switched to Stribuild which seems to have less negative effects.

My levels are very low or undetectable but my medications keep me sick, nausea, vomiting, weakness, lethargy, severe migraines. To boot I'm on Lithium, Neurtonin and nausea medications and deep leg vein issues. Alprazolam for panic disorder, mood/manic etc.

My original SSDI was denied, my secondary appeals application is in process but I foresee them denying me again.  Since I'm so close to destitution I am in jeopardy of losing my apartment and even a place to keep the Marinol cold which helps me to eat.

I've been considering just stopping the HIV medications in hope that I would feel better to go out and try to find work?  The way it is while on my medications just doing my laundry is an all day affair so I can't imagine doing a 40 hour work week while on the medications.

I know by stopping the medications ultimately I will get sicker but I find myself in a desperate financial situation which may require me to try to find work even though I was fired from my last job for being sick too much.

I have written senators, have an advocate for my SSDI yet they keep dragging their feet and my bills and rent keep piling up and are postponed due to my inability to work without becoming fatigued.

Is stopping my medications a good idea until I can at least find a job and try to stabilize my financial situation or stay on the medications and risk being denied by SSDI a 2nd time thus throwing me into deeper financial chaos?

I'm not even sure if stopping the medications would allow me to feel better or not, has anyone been in this type of situation before?

If you stay unemployed, how long do you have until you lose your apartment? 
Seems like a rock and hard place for the medications. Sounds like in the long run you need both HIV meds and mental health meds so why go off either?  Both of them have to work together and won't that take awhile to figure out and benefit from, and feel better?

So what is the plan if you lose your apartment. Do you have friends, family, who? To listen, to help, maybe live with? Or can you get a roommate now to help pay the rent? 

One time I was thrown out of an apartment and had no money and no job and I had a date of a few weeks to find a solution. I told everyone I knew the dilemma and a guy who worked in a cheap student restaurant where I had been eating for 2 years didn't bat and eyelash and invited me to come live with him and all his buddies.  This suited me better than family and friends - who were being all middle-class about it.  We were basically in a very overcrowded flop house for restaurant workers and I lived there a year and it was altogether great and also what I could afford, until I had a new job, and money saved to get a new apartment.

Sometimes you never know where a helping hand can come from, I had this experience a few times.  That someone you didn't see as a friend in fact can be very generous, human, and become a friend, too.

[notsomuch]

Thank you for all your ideas and input. My problem was that the initial sickness wasn't detected by the hospital for almost 5 months prior to my diagnosis on 8/13, of which several times I spent with fevers in excess of 104.5 without seeking treatment, then afterwards being admitted with high fevers and treatments for staff infections, both them and myself just thinking I had some type of flu. Nobody really knows what kind of damage that has done to me physically or neurologically between that time and my diagnosis, all I really know is that I wear out so quick from simple tasks such as laundry or getting groceries from the store, they become major events for me now. My father having to have a heart transplant several years ago and my mother a quad-bypass recently had my Primary request I have go in for ultrasounds on my heart.  I only can hope that they make a decision soon, life under a bridge doesn't really seem viable and I have no family that would be there for me as they are under nursing home care themselves. My infectious disease doctor didn't seem to like the idea of me stopping my medications to try to feel better so I guess I have no choice but to wait it out and see where fate takes me, again thank you for all of your input.

[mecch]

I don't think you should stop any medicine and I also don't think you should let fate take over your future.
Do you have an HIV/AIDS service organisation near you? Maybe what you need is some advocacy about your absence of security.  Can you get a social worker to help you figure out what your next steps are?  I would imagine that people would be motivated to help you avoid homelessness while the SSDI is taking such a long time.

[notsomuch]

Well I tried to get help from ARCW but they turned out to be of very little help outside of a bag of food every month.  I just decided to stop taking my medications to try to feel better so I can find a job. Can't be on the streets, thanks for your time.

[mecch]

My levels are very low or undetectable but my medications keep me sick, nausea, vomiting, weakness, lethargy, severe migraines. To boot I'm on Lithium, Neurtonin and nausea medications and deep leg vein issues. Alprazolam for panic disorder, mood/manic etc.

You are taking a lot of medicine. Why do you assume its the HIV medicine that has to go?  Isn't there a way for you to get a doctor to sort out the adverse effects so you can get the HIV medicine and the mental health medicine you need.

If I read your last post correctly, so you have now stopped the anti-retrovirals? 

Getting a job isn't all that easy no matter how great someone feels. 

I worry that there is something like an excuse or projection going on here.  That the HIV medicine has to go, in order to feel better (where is the guarantee of that), in order to get a job (where is the guarantee that will happen)?   If you are sure this is not a way to rationalise quitting HIV medicine for some other reason.... OK; god speed, I wish you the best of luck getting that job.   I feel a tiny bit of fatalism in what you have posted so far but it may be a complete misread, I hope so. 

[zach]

i feel you are making a huge mistake. but that is your right. please reconsider.