It’s been a stressful week. I’m very behind on HPS stuff because I’ve been too busy trying to sort out my personal business.
Yesterday I got a letter from the state of Kansas telling me that my SSDI income (the only steady income I currently have) is too much and thus disqualifies me from the Medicaid program I’d hoped to get into for the disabled and the medically needy. How is that even possible?
By the time I pay my rent, and my COBRA my SSDI check is gone. Forget about groceries, lights, heat etc. (Since I am not eligible for straight up Medicaid – I make more than $490 a month with is too much for a single adult in Kansas to qualify – keeping in mind that if I weren’t disabled, I wouldn’t even be allowed to apply) I am doing a little contract work, and it is starting to pick up – PTL – otherwise I wouldn’t be getting by.
Still, when you consider that what I can earn is limited by Social Security – and that in addition to the COBRA I have to pay co-pays on 18 medications, ostomy supplies and CPAP supplies – it boggles my mind that I could have too much income to be eligible for anything.
I have one shot left. There’s another program for people with disabilities who are trying to work, but it’s not very self employed friendly. I went to a tax specialist today as I have to prove that I’m self employed and paying estimated taxes. This isn’t easy when you live so close to the edge. I’m on SSDI because my health, and thus ability to work, can be unpredictable, and yet somehow the government expects me to have a stable income to qualify for this program. Essentially, I have to make up what I think I’ll make in a quarter, pay the estimated tax (that I probably won’t owe in the end and could really use to make ends meet) and then catch up) so that I can apply.
The whole thing is crazy!
They asked me if I had any unpaid medical bills they could consider to try to get me eligible. Since I haven’t been admitted, I don’t. If you don’t pay for the drugs or supplies the pharmacy doesn’t give them to you. How would I have unpaid bills? I’d just have to go without.
Needless to say, my blood pressure that had been so great lately suddenly sky rocketed yesterday. What if I’m not eligible for this last program?
If nothing goes wrong, and if I can earn my maximum every month, I could get by. I feel like I’m being punished for having a genetic disease. I feel like the system doesn’t care if I get sick and die. I feel angry at all the people who can’t seem to grasp why we need health care reform. I feel angry at all the politicians that have made the current bill so complicated I don’t even know what’s in it for sure anymore.
The Senate’s discussion about expanding Medicare to those 55 and over got under my skin a bit. It isn’t that I don’t understand the unique needs of that age group. Rather, it’s that for years there has been a bill in Congress to eliminate the two-year gap between when you’re found eligible for social security disability, and when you can begin to get Medicare. These are people in the most acute need. They have left work because they are ill. Not only are they ill, but they qualify for social security disability, which means you’re pretty disabled or pretty sick as their standards are tough to meet. Then, with no income coming in except a small social security check, you’re supposed to pay COBRA? And co-pays? What kind of a sick joke is that? Yet, it’s the way it’s been for years and no one has wanted to correct it. When I’ve been involved with efforts to try to fix this, our representatives tell us “it’s too expensive.” Yep, our conservative, pro-life Senators seem happy to let people like me get sick and likely die earlier than we might have otherwise. I find it offensive. Why isn’t anyone looking at this situation as a moral issue as well as a financial one?
I am blessed though.
Yesterday I got a nice check in the mail from a freelance project. I wasn’t supposed to get the check until the middle of January. At first, I was upset because I was trying to qualify for this medical program, and the check would have knocked me out of the running for sure. Then, I opened the letter telling me I wasn’t eligible. So, for now I’m able to pay the COBRA this month and next month and fill all the scripts I’m about to be out of. It effectively buys me another two months of secure survival.
God is looking out for me.
Yesterday evening I was baking some Christmas cookies (a topic for another blog rant) and listening to Christian radio. This is somewhat unusual. I often love the sermons I hear, but then get totally turned off by the political ranting. The subject of the sermon was about how God provides. It was as if it was speaking to me directly. Somehow through the last year every time I thought the gig was up, I’d be moving in with my dad or Ryan and Sara – somehow something has happened to pull me through another few months. I might still get another freelance gig that will cover February – and I’m operating on faith that I’ll somehow come up with funds to go play in New York for two days after conference.
I’m a planner, however. I feel like if I’m a responsible human being I should be able to forsee this problem and do what I need to do to solve it.
I know my family worries about me. My mother is forever asking about my financial situation. She worries, although she’s not really in much of a position to help. I hate it that this is the case.
I thought I did everything right. I got my degree – graduated at the top of my class – worked, often even more than one job, and yet I now have nothing to show for it. Not even simple security for the basics.
My mom asked me the other day what I’m going to do about retirement. Retirement? I can’t even think about it. If I beat HPS and live long enough to make it to retirement age, I expect that surfing the edge of medical advances will eat up any ounce of anything extra I ever have. That’s so depressing.
Yesterday I got a letter from the state of Kansas telling me that my SSDI income (the only steady income I currently have) is too much and thus disqualifies me from the Medicaid program I’d hoped to get into for the disabled and the medically needy. How is that even possible?
By the time I pay my rent, and my COBRA my SSDI check is gone. Forget about groceries, lights, heat etc. (Since I am not eligible for straight up Medicaid – I make more than $490 a month with is too much for a single adult in Kansas to qualify – keeping in mind that if I weren’t disabled, I wouldn’t even be allowed to apply) I am doing a little contract work, and it is starting to pick up – PTL – otherwise I wouldn’t be getting by.
Still, when you consider that what I can earn is limited by Social Security – and that in addition to the COBRA I have to pay co-pays on 18 medications, ostomy supplies and CPAP supplies – it boggles my mind that I could have too much income to be eligible for anything.
I have one shot left. There’s another program for people with disabilities who are trying to work, but it’s not very self employed friendly. I went to a tax specialist today as I have to prove that I’m self employed and paying estimated taxes. This isn’t easy when you live so close to the edge. I’m on SSDI because my health, and thus ability to work, can be unpredictable, and yet somehow the government expects me to have a stable income to qualify for this program. Essentially, I have to make up what I think I’ll make in a quarter, pay the estimated tax (that I probably won’t owe in the end and could really use to make ends meet) and then catch up) so that I can apply.
The whole thing is crazy!
They asked me if I had any unpaid medical bills they could consider to try to get me eligible. Since I haven’t been admitted, I don’t. If you don’t pay for the drugs or supplies the pharmacy doesn’t give them to you. How would I have unpaid bills? I’d just have to go without.
Needless to say, my blood pressure that had been so great lately suddenly sky rocketed yesterday. What if I’m not eligible for this last program?
If nothing goes wrong, and if I can earn my maximum every month, I could get by. I feel like I’m being punished for having a genetic disease. I feel like the system doesn’t care if I get sick and die. I feel angry at all the people who can’t seem to grasp why we need health care reform. I feel angry at all the politicians that have made the current bill so complicated I don’t even know what’s in it for sure anymore.
The Senate’s discussion about expanding Medicare to those 55 and over got under my skin a bit. It isn’t that I don’t understand the unique needs of that age group. Rather, it’s that for years there has been a bill in Congress to eliminate the two-year gap between when you’re found eligible for social security disability, and when you can begin to get Medicare. These are people in the most acute need. They have left work because they are ill. Not only are they ill, but they qualify for social security disability, which means you’re pretty disabled or pretty sick as their standards are tough to meet. Then, with no income coming in except a small social security check, you’re supposed to pay COBRA? And co-pays? What kind of a sick joke is that? Yet, it’s the way it’s been for years and no one has wanted to correct it. When I’ve been involved with efforts to try to fix this, our representatives tell us “it’s too expensive.” Yep, our conservative, pro-life Senators seem happy to let people like me get sick and likely die earlier than we might have otherwise. I find it offensive. Why isn’t anyone looking at this situation as a moral issue as well as a financial one?
I am blessed though.
Yesterday I got a nice check in the mail from a freelance project. I wasn’t supposed to get the check until the middle of January. At first, I was upset because I was trying to qualify for this medical program, and the check would have knocked me out of the running for sure. Then, I opened the letter telling me I wasn’t eligible. So, for now I’m able to pay the COBRA this month and next month and fill all the scripts I’m about to be out of. It effectively buys me another two months of secure survival.
God is looking out for me.
Yesterday evening I was baking some Christmas cookies (a topic for another blog rant) and listening to Christian radio. This is somewhat unusual. I often love the sermons I hear, but then get totally turned off by the political ranting. The subject of the sermon was about how God provides. It was as if it was speaking to me directly. Somehow through the last year every time I thought the gig was up, I’d be moving in with my dad or Ryan and Sara – somehow something has happened to pull me through another few months. I might still get another freelance gig that will cover February – and I’m operating on faith that I’ll somehow come up with funds to go play in New York for two days after conference.
I’m a planner, however. I feel like if I’m a responsible human being I should be able to forsee this problem and do what I need to do to solve it.
I know my family worries about me. My mother is forever asking about my financial situation. She worries, although she’s not really in much of a position to help. I hate it that this is the case.
I thought I did everything right. I got my degree – graduated at the top of my class – worked, often even more than one job, and yet I now have nothing to show for it. Not even simple security for the basics.
My mom asked me the other day what I’m going to do about retirement. Retirement? I can’t even think about it. If I beat HPS and live long enough to make it to retirement age, I expect that surfing the edge of medical advances will eat up any ounce of anything extra I ever have. That’s so depressing.
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