Finances
Before I get to the hard-to-talk-about stuff, I'll tell you the good news: I'm getting my leg braces on Monday, my motorized wheelchair on Wednesday, and my custom cushion on July 8.
In health-related news, I had to go to the emergency department Tuesday night with the worst pain I have ever experienced in my life (childbirth may be worse, but I wouldn't know) due to a problem with my catheter. They did a routine test for infection and I found out this morning that further testing revealed I have a staph infection. I don't have any obvious symptoms, but I'm now on Sulfa for a week.
Now for the hard stuff. I touched on this briefly in my last update and I've otherwise avoided talking about it because money problems are one of those taboo topics. But it's all part of what I'm going through and lately it's been the dominant part.
I get $1636 each month from Social Security Disability (SSDI). My rent (the lowest we could find for an accessible apartment) is $770. By the time I pay for electricity, other utilities (my rent doesn't cover water/sewer/trash), internet access, cell phone*, and other necessities, there's not much left.
I do get $200 in food stamps, but it doesn't totally cover our food expenses, and it doesn't cover non-food items like tin foil or plastic bags (or cat food). Medicaid pays for some medical supplies but not all, so I have to pay for most drug store needs (e.g deodorant, shampoo, etc.).
DHS charges me $960 each month to cover home care services (they call it a "pay-in"). When I first came home in April, I had an agency caregiver coming in 2 hours each morning and evening. Tony got certified as a caregiver, and took over most of the hours in May, and the agency caregiver came in 2 hours, 3 days a week. After much complaining to my case worker, he managed to get the May payment waived, but I still had to pay the June payment. Tony's pay for May didn't quite cover the June payment, but he was able to borrow the difference from a friend.
For June, Tony has been designated as a 24-hour caregiver, so he'll get paid more, and his June pay will cover the July payment, with a little left over. In any case, he's basically working to give me the money to pay for his services. If he were just paying me half of my rent and utilities instead, it wouldn't nearly come up to amount he is paying.
I have been through bad financial periods before, but nothing like this. It's embarrassing when my OT recommends getting a bath decals or bungee cords or some other inexpensive item, and I have to say I can't afford it. I can't get my hair cut or buy clothes (fortunately, I have plenty of clothes for now, but I'll probably need new shoes once I get my leg braces).
I've been thinking about this post for a long time, composing it in my mind, including how I should share my Amazon.com Need list and Want list but it's taken me a while to get up the courage to do it. And now my desktop computer has died. Granted, I still have my laptop, but I only use it for a few things while in bed (web surfing, watching videos, posting these updates). I have most of my important programs and files on my desktop, and last night while I was sleeping, it just turned itself off and won't come on again. Tony has figured out that at least the power supply is bad, but it could also be the motherboard, and if so, the graphics card may need replacing too.)
Between SSDI, Medicaid, and the Oregon SNAP program (food stamps), I am getting a lot of government support, which I am very grateful for. For example, I feel very lucky to be able to get the medical care, therapy and equipment I need. And I have cut back on a lot every non-essential expense I could. But it's just not enough.
So, as hard this is for me, I am humbly asking for your help. Any assistance with any of the items on my Need or Want list, or cash (via PayPal) would be greatly appreciated. Also, if you know of a job I can do from home/online with minimal upfront costs, I would be very interested in that too. I expect to be able to start looking for a real job in a few months, but I'm not quite ready yet. I know this is a difficult time for everyone, so I have no expectations.
*I don't have a land line-only the cell. I've had the same Verizon Wireless service (and hence, phone number) since before I moved to Oregon. My current bill is about $75. It would be much cheaper to have a Cricket phone (about $40), but it would mean canceling a 2-year contract after only about 4 months into it, and giving a new phone number to not only friends and family, but also all of the businesses and organizations (medical and otherwise) who need to be able to contact me (which is a lot these days). I'm seriously considering this but it's a painful decision.
In health-related news, I had to go to the emergency department Tuesday night with the worst pain I have ever experienced in my life (childbirth may be worse, but I wouldn't know) due to a problem with my catheter. They did a routine test for infection and I found out this morning that further testing revealed I have a staph infection. I don't have any obvious symptoms, but I'm now on Sulfa for a week.
Now for the hard stuff. I touched on this briefly in my last update and I've otherwise avoided talking about it because money problems are one of those taboo topics. But it's all part of what I'm going through and lately it's been the dominant part.
I get $1636 each month from Social Security Disability (SSDI). My rent (the lowest we could find for an accessible apartment) is $770. By the time I pay for electricity, other utilities (my rent doesn't cover water/sewer/trash), internet access, cell phone*, and other necessities, there's not much left.
I do get $200 in food stamps, but it doesn't totally cover our food expenses, and it doesn't cover non-food items like tin foil or plastic bags (or cat food). Medicaid pays for some medical supplies but not all, so I have to pay for most drug store needs (e.g deodorant, shampoo, etc.).
DHS charges me $960 each month to cover home care services (they call it a "pay-in"). When I first came home in April, I had an agency caregiver coming in 2 hours each morning and evening. Tony got certified as a caregiver, and took over most of the hours in May, and the agency caregiver came in 2 hours, 3 days a week. After much complaining to my case worker, he managed to get the May payment waived, but I still had to pay the June payment. Tony's pay for May didn't quite cover the June payment, but he was able to borrow the difference from a friend.
For June, Tony has been designated as a 24-hour caregiver, so he'll get paid more, and his June pay will cover the July payment, with a little left over. In any case, he's basically working to give me the money to pay for his services. If he were just paying me half of my rent and utilities instead, it wouldn't nearly come up to amount he is paying.
I have been through bad financial periods before, but nothing like this. It's embarrassing when my OT recommends getting a bath decals or bungee cords or some other inexpensive item, and I have to say I can't afford it. I can't get my hair cut or buy clothes (fortunately, I have plenty of clothes for now, but I'll probably need new shoes once I get my leg braces).
I've been thinking about this post for a long time, composing it in my mind, including how I should share my Amazon.com Need list and Want list but it's taken me a while to get up the courage to do it. And now my desktop computer has died. Granted, I still have my laptop, but I only use it for a few things while in bed (web surfing, watching videos, posting these updates). I have most of my important programs and files on my desktop, and last night while I was sleeping, it just turned itself off and won't come on again. Tony has figured out that at least the power supply is bad, but it could also be the motherboard, and if so, the graphics card may need replacing too.)
Between SSDI, Medicaid, and the Oregon SNAP program (food stamps), I am getting a lot of government support, which I am very grateful for. For example, I feel very lucky to be able to get the medical care, therapy and equipment I need. And I have cut back on a lot every non-essential expense I could. But it's just not enough.
So, as hard this is for me, I am humbly asking for your help. Any assistance with any of the items on my Need or Want list, or cash (via PayPal) would be greatly appreciated. Also, if you know of a job I can do from home/online with minimal upfront costs, I would be very interested in that too. I expect to be able to start looking for a real job in a few months, but I'm not quite ready yet. I know this is a difficult time for everyone, so I have no expectations.
*I don't have a land line-only the cell. I've had the same Verizon Wireless service (and hence, phone number) since before I moved to Oregon. My current bill is about $75. It would be much cheaper to have a Cricket phone (about $40), but it would mean canceling a 2-year contract after only about 4 months into it, and giving a new phone number to not only friends and family, but also all of the businesses and organizations (medical and otherwise) who need to be able to contact me (which is a lot these days). I'm seriously considering this but it's a painful decision.