I have not written in quite some time. I seem to get caught up in my life. I think about writing but it just does not seem to happen. I even wrote it in my calendar as a dead-line “Write blog” and that does not seem to motivate me. Strange how that works! Well, enough of my procrastination and excuses no one wants to hear. For many months, I have been struggling with a question, “return to work or stay on disability?” Some days this question seems easy to answer, while other days I find myself waffling between staying and going. Let me give you a little background. I have been on Social Security Disability Income (SSDI) for the past 11 years; ever since my AIDS diagnosis. It seems I had worked enough to qualify for SSDI; I had worked since I was 14 years old and had a number of well paying jobs. My check is not that much but is enough to pay my monthly bills and that is about it. I live month to month hoping no emergencies come up. Going back to work may mean losing some of the benefits I currently have. I have both Medicare and Medicaid, which pay for all my medical appointments, my labs, and my medications. My copayments are minimal. The current cost of my medication is over $4,000 a month. I am resistant to most of the medications and I have some kidney damage. I have been around a long time. My medications regimen can get quite complicated. Sometimes I feel as if I could conquer the world while other days I can’t seem to get out of bed. My T-cells are below 400, my viral load is undetectable, and it has been this way for quite some time. I want to work, I want to feel productive, I want to help others, and I would love to make some money in the process, but at what cost? I have spoken with numerous people about going back to work and I can’t get a straight answer from anyone about how that might look. I get bits and pieces; I get answers like “it might” or “it may”; there seems to be a definite answer of how it might look. I have read many articles, journals, policy manuals, etc to try to make heads or tails of it all and I seem to find myself with more questions than answers. Social Security can tell me what will happen to my check, but cannot explain what will happen with Medicare or Medicaid or what it would cost me out of pocket if I lost some of my services. Each system seems to work in a silo not knowing what the other is doing. I have been talking with a “Work Incentives Planning and Assistance (WIPA)” program specialist but I seem to know more than my counselor does, which is a little scary. I have tried to talk with my HIV case manager; which is a joke in and of itself. I did have a doctor once tell me “You need to put your big girl panties on and go back to work” but she doesn’t think anyone should be on disability. My other doctors just seem to listen to me and then stare into space not giving me any direction or their opinion. It is as if they are afraid to talk about the subject. Do they know something that I don’t know? I have been told by many people “Do not go back to work, it will screw everything up!” Will it really? Is our system so messed up that I need to stay where I am? I am not so sure about that and I guess I will soon find out. It seems a job came looking for me; a good job at the local University. A dream job, one I cannot pass up. Someone called me and told me about a position that they thought I would be perfect for. I went on two interviews for the position and at the last interview, I was told, “Welcome aboard.” I am thrilled! I will be talking with the researcher, my new boss, this afternoon to finalize my hours and discuss details. The position is part time but pays more that most would make working 40 hours a week. I will be working on a project that involves women and HIV; how appropriate is that? As far as Social Security goes, I can keep my entire disability check during the 9 months Trial Work Period, which you get once in a 60-month period. After the nine months, when I make over $720 a month they will start deducting money from my SSDI check. If I have expenses I must pay in order to work, like my medication, those may be subtracted from my gross before Social Security makes its complicated subtraction. If I make over $1,000 in any given month that is considered Substantial Gainful Activity (SGA) and I would not get any portion of my check. I think. It actually is a little more complex than I am discussing here. I am trying to keep it as simple as possible because my head just starts spinning. Okay, so I am going to make a little money, which may cause me to lose my Medicaid, which pays for my Medicare Part A, B, and D premiums and other catastrophic coverage. My worker at WIPA said, “There is a policy where you might be able to keep your Medicaid” but she could not really explain it. I found a policy book that states, “Section 1619(b) allows an individual, who loses the right to a cash benefit through the receipt of wages, to automatically continue Medicaid eligibility in most cases.” Each state has a threshold amount that a worker can make a still keep Medicaid. New York’s threshold is $43,956 for 2010 and Florida is $28,427 (Is cost of living that different in each state). So as long as I keep my income and disability check below the threshold amount I will be eligible, right?!?! I think?!?! Is your head spinning yet?!?!? Why does this all have to be so complicated and stressful? I am dealing with a disease, which is greatly affected by stress; anyone who is on disability is dealing with a medical condition that can be affected by stress. All medical conditions are affected by stress. Just say no to stress! Will the health care reform help me in any way?!? The safety nets, like Ryan White and AIDS Drug Assistance Programs, are in trouble throughout our nation; there are “waiting lists” all over the country. Thousands of people who are HIV+, and cannot afford their medications (who can?) but must wait for help! Will help be available if I need it? Who has the answers? Who can help navigate the system? I am stepping out in faith. This job found me, perhaps my higher power/God has plans for me that I am unaware of. I will step out in faith and see how this all works out. I will try to keep you informed. Thanks for reading.
Wow what an amazing blog and Im a skeptic, I too am in the same boat diagnosed AIDS in 2005 with crytococcal Menegitis, after working 28 years making good money as an electrician I suddenly found myself in the SSDI trap. Ive like u have been to shrinks, doctors etc. The reason theystare into space is because thats what they do for a living, they are used to it and tuning out what they dont want to or care to hear.....when you worked Im sure you may have done the same thing however once an AIDS diagnosis comes along for me anyway I feel hesitant unsure and at times question my ability, this is the HIV itself that does this Im told by impaitring our cognitive abilities. I was told I may be paralyzed, wheelchair bound or possibly die from the menegitis because it went undiagnosed for so long. Im here though 5 years llater still walking talking and wondering about the future. SSDI is tough I know Im there with you but I like u started a new job myself. Noone knows what the future holds but to not take a chance means nothing will happen. I believe the man or woman lol upstairs is guiding you to take this job, Im sure it will be fun and you will be passionate about it and the worries and ifs and what ifs will diminish in time as you absorb yourself in your new job and may I also add new found freedom. Best of luck to you and what an amazing blog you have written, very inspirational well thought out and uplifting to those who question these issues.
Dave, thanks for your
Dave, thanks for your comments. I am loving the new job. It is exciting and wonderful to be a part of such an amazing project. Pretty darn tired after work though. Something I will just have to get use to. Take care my friend and best wishes in all that you do.
Love you sis
Please keep us informed and let us know what happens! You will make a truely wonderful addition to any staff and I wish you the best! You are an amazing woman who's story needs to be heard, it is inspirational to say the least--
Thanks so much for your kind words.
Hi beautiful ladies,
You go girl, do wot u think is best for you, take that risk it is the only way of finding out, God will lead u, all the best and give it your best shot. Lots of love..
Thanks Marcia. It is amazing to be alive. Twelve years ago I was homeless living on the streats and dying of AIDS; today I am about to work at a University. God is good!
Someone PLEASE come forward and share information - this is real LIFE ( ANSWERS )
The force be with you as you make this step forward !
I think u are awesome women, very smart and intelligent, the blog is OUTSTANDING.
Vicky u are full of knowledge & wisdom & it all cam from God it's a gift to be share for the Glory of God
Love u Sis
You are an inspiration to me and others. I wish you the best of luck and I know you will do an amazing job and everything will work out as it is suppose to. Keep strong and I will keep you in my prayers.
I am coming to a time in my life that retirement is just around the corner. I spend about 500.00 a year on our, my husband and mine, Rx co-pays. If we were to lose our coverage it would cost more than we make in a year, just to pay for our medications. This topic is giving me opportunity to revisit this subject. I need to do some research. Thanks, I needed that.
I often wonder what it would be like to live in a society where we did not have to worry about health care. Where we were comfortable in the knowldege that our health would be taken care of. One can only hope that our nation moves forward to a place where everyone has affordable access to quality care. Take care.