(no subject)
May. 13th, 2004 08:55 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
thejunipertreeThis is more for my benefit, then anything. I need to have all of this written out so I can organize my thoughts.
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I am just so fucking tired, it's not even funny.
Every spare moment I've had this week has been dedicated to ferreting out information to help my mother's situation. What is the situation, you ask? Well, let me lay it out for you.
My mother was diagnosed with Stage IV colon cancer in June 2002. She went on short term disability for six months, when the disability ran out, she was forced to go back to work. During that six months, she went through twenty rounds of intensive chemotherapy.
Some time after she returned to work, it was decided that she should undergo radiation therapy. So, she did thirty days of radiation, during which she also received a continuous low level chemo feed.
Around late November/early December of 2003, her boss decided that it was time to start laying people off. Being the benevolent soul he is (*snort*), he gave her the option of either accepting the lay-off or getting her doctor to sign her out on short term disability again. Since she needed health insurance coverage, she opted for the short term disability route.
Now it's the beginning of May and her short term disability is about to run out again (remember, it's only for six months). And we're faced with some very difficult situations to muddle through.
1. Once she finishes this spate of disability, she would be expected to go back to work. However, she's in no shape to do so. Therefore, she will lose her health insurance because she won't technically be employed with that company any longer. So, problem #1 is no health insurance. No money to pay for her chemo treatments and numerous prescriptions.
2. She's applied for Social Security disability (SSD), which is only given to people who fall under a very specific criteria. What this criteria actually is, I haven't the foggiest notion. However, you do have to be expected to be disabled for over one year or have your disability end in death. It is notoriously difficult to be accepted for SSD. Many people are denied for ridiculous reasons, though most of them hire lawyers for an appeal. Oh, and even if you are accepted for SSD, it can take up to six months to get it. Problem #2 is waiting for SSD/not getting SSD at all. No money to pay her rent and bills (I can cover mine and my brother can cover his, but we just barely squeak by).
3. She has an extreme hernia that causes her to have enormous amounts of pain, which affects whether or not she eats. Not eating has caused her weight to drop to 108 pounds. You heard me right. One hundred and eight. When all of this started in June 2002, she weighed around 176. The hernia needs to be surgically fixed. But, because of how bad it actually is (it's huge), her recovery time would be lengthened. Not to mention that she's in no condition to withstand a very intensive surgery right now because of her weight and general weakness. Problem #3, the hernia.
4. As I wrote in my journal the other day, the oncologist told us that because of the new spots in her liver, lungs, and bladder, if she does not go through chemotherapy again (and posthaste), she has months to live. Months. As in, less than a year. However, she's in no condition to go through chemotherapy. Her weight, may I remind you again, is 108 pounds. To go through chemo she has to get stronger and gain some weight. Problem #4, chemo.
4a. (This is where it gets a bit tricky.) To go through chemo, my mom has to gain weight. But because of the hernia, she has a lot of difficulty eating. To have the hernia fixed, she has to gain weight. Now, say she actually does gain enough weight and is feeling a bit stronger. Does she get the hernia surgery first, so she's not in pain, before she goes through chemo? Or does she go through the chemo first, build herself back up from that, and then get the hernia fixed? It's half a dozen of one, six of the other. If she goes for the hernia surgery first, she runs the risk of actually becoming sicker due to the pressing need for chemo within the next few months. But, if she does chemo first, she's very likely to not bounce back from it because of being weakened from the chemo and weakened from the hernia. Problem #5, chemo vs. hernia surgery.
5. Say she does actually get accepted for SSD, she won't have health insurance for two years. She needs (is there another word that means REALLY FUCKING NEEDS, like beyond needs?) coverage to handle any of the health issues, be they chemo or hernia surgery. Not to mention the slew of medication she has to take, which is rather expensive when you don't have a prescription plan. Medicaid is an option, however one must (again) meet a very narrow criteria to be accepted. And I have a feeling that they are not going to like the fact that my brother and I both work. And that they'll decide we make TOO MUCH money for her to receive Medicaid. We can't lie to Medicaid and say that one of doesn't live here, because our mother has to show cancelled rent checks to welfare and SSD and they're going to want to know why her portion of the rent only equals a third. Problem #6, Medicaid.
--------------
Needless to say, the past week has been hellish. I have used every keyword combination humanly possible in Google to get information on assistance with our problems. I've come across some very valuable resources (like the Patients Advocate Organization and Cancer Care, Inc.), but there doesn't seem to be any kind of program in our state, much less this country, that serves as a safety net for people who are suffering from cancer. I've read innumerable messages on so many message boards from people who are in the exact same situation, that I haven't even bothered to post my own query because there just doesn't seem to be any kind of definitive answer.
The other day, I had the idea that I could solicit some sort of fund raising activity/charity from various groups in my area. I've already started the ball rolling with that by approaching Miss Rowan's husband, Ellis, who is an officer in a Masonic lodge and The Engineer, who is a fledgling mason in a lodge closer to us. Masons give millions of dollars in charity every year. They told me that each lodge master can give a hundred dollars without even approaching the rest of the lodge first. And if they ask the other lodge members, they can give up to three hundred. After that, they can approach the district lodge that governs each county. They could even possibly hold a fundraiser for her.
I'm going to draft a letter and send it out to every single fraternal organization in my area (and the surrounding areas). All of them. Explaining the situation and desperately hope that someone decides to help. If I could, at the very least, get her portion of the rent paid for a year, that would be fabulous ($2976.00, I calculated it). If I could manage to also have her bankruptcy payment paid for a whole year, that would be even better (that brings the total to just under five grand). I'm also going to bring it up to the MWC (the pagan discussion group I belong to), to see if they can spread the word to any of their contacts and possibly wrangle help from any of the pagan organizations around here. Though I'm not banking on that, because getting pagans to do anything all at the same time is a lot like herding ferrets (most people say cats, but I strongly believe that those people, unlike myself, have never tried to herd a business of ferrets).
If anyone reading this has any other ideas, or any experience in dealing with matters such as this (any of it, whether it be SSD or Medicaid or welfare or health insurance or charity or fundraising), please contact me through email (if you have it) or my LJ. I would be infinitely grateful and welcome any suggestions.
-----------------
I am just so fucking tired, it's not even funny.
Every spare moment I've had this week has been dedicated to ferreting out information to help my mother's situation. What is the situation, you ask? Well, let me lay it out for you.
My mother was diagnosed with Stage IV colon cancer in June 2002. She went on short term disability for six months, when the disability ran out, she was forced to go back to work. During that six months, she went through twenty rounds of intensive chemotherapy.
Some time after she returned to work, it was decided that she should undergo radiation therapy. So, she did thirty days of radiation, during which she also received a continuous low level chemo feed.
Around late November/early December of 2003, her boss decided that it was time to start laying people off. Being the benevolent soul he is (*snort*), he gave her the option of either accepting the lay-off or getting her doctor to sign her out on short term disability again. Since she needed health insurance coverage, she opted for the short term disability route.
Now it's the beginning of May and her short term disability is about to run out again (remember, it's only for six months). And we're faced with some very difficult situations to muddle through.
1. Once she finishes this spate of disability, she would be expected to go back to work. However, she's in no shape to do so. Therefore, she will lose her health insurance because she won't technically be employed with that company any longer. So, problem #1 is no health insurance. No money to pay for her chemo treatments and numerous prescriptions.
2. She's applied for Social Security disability (SSD), which is only given to people who fall under a very specific criteria. What this criteria actually is, I haven't the foggiest notion. However, you do have to be expected to be disabled for over one year or have your disability end in death. It is notoriously difficult to be accepted for SSD. Many people are denied for ridiculous reasons, though most of them hire lawyers for an appeal. Oh, and even if you are accepted for SSD, it can take up to six months to get it. Problem #2 is waiting for SSD/not getting SSD at all. No money to pay her rent and bills (I can cover mine and my brother can cover his, but we just barely squeak by).
3. She has an extreme hernia that causes her to have enormous amounts of pain, which affects whether or not she eats. Not eating has caused her weight to drop to 108 pounds. You heard me right. One hundred and eight. When all of this started in June 2002, she weighed around 176. The hernia needs to be surgically fixed. But, because of how bad it actually is (it's huge), her recovery time would be lengthened. Not to mention that she's in no condition to withstand a very intensive surgery right now because of her weight and general weakness. Problem #3, the hernia.
4. As I wrote in my journal the other day, the oncologist told us that because of the new spots in her liver, lungs, and bladder, if she does not go through chemotherapy again (and posthaste), she has months to live. Months. As in, less than a year. However, she's in no condition to go through chemotherapy. Her weight, may I remind you again, is 108 pounds. To go through chemo she has to get stronger and gain some weight. Problem #4, chemo.
4a. (This is where it gets a bit tricky.) To go through chemo, my mom has to gain weight. But because of the hernia, she has a lot of difficulty eating. To have the hernia fixed, she has to gain weight. Now, say she actually does gain enough weight and is feeling a bit stronger. Does she get the hernia surgery first, so she's not in pain, before she goes through chemo? Or does she go through the chemo first, build herself back up from that, and then get the hernia fixed? It's half a dozen of one, six of the other. If she goes for the hernia surgery first, she runs the risk of actually becoming sicker due to the pressing need for chemo within the next few months. But, if she does chemo first, she's very likely to not bounce back from it because of being weakened from the chemo and weakened from the hernia. Problem #5, chemo vs. hernia surgery.
5. Say she does actually get accepted for SSD, she won't have health insurance for two years. She needs (is there another word that means REALLY FUCKING NEEDS, like beyond needs?) coverage to handle any of the health issues, be they chemo or hernia surgery. Not to mention the slew of medication she has to take, which is rather expensive when you don't have a prescription plan. Medicaid is an option, however one must (again) meet a very narrow criteria to be accepted. And I have a feeling that they are not going to like the fact that my brother and I both work. And that they'll decide we make TOO MUCH money for her to receive Medicaid. We can't lie to Medicaid and say that one of doesn't live here, because our mother has to show cancelled rent checks to welfare and SSD and they're going to want to know why her portion of the rent only equals a third. Problem #6, Medicaid.
--------------
Needless to say, the past week has been hellish. I have used every keyword combination humanly possible in Google to get information on assistance with our problems. I've come across some very valuable resources (like the Patients Advocate Organization and Cancer Care, Inc.), but there doesn't seem to be any kind of program in our state, much less this country, that serves as a safety net for people who are suffering from cancer. I've read innumerable messages on so many message boards from people who are in the exact same situation, that I haven't even bothered to post my own query because there just doesn't seem to be any kind of definitive answer.
The other day, I had the idea that I could solicit some sort of fund raising activity/charity from various groups in my area. I've already started the ball rolling with that by approaching Miss Rowan's husband, Ellis, who is an officer in a Masonic lodge and The Engineer, who is a fledgling mason in a lodge closer to us. Masons give millions of dollars in charity every year. They told me that each lodge master can give a hundred dollars without even approaching the rest of the lodge first. And if they ask the other lodge members, they can give up to three hundred. After that, they can approach the district lodge that governs each county. They could even possibly hold a fundraiser for her.
I'm going to draft a letter and send it out to every single fraternal organization in my area (and the surrounding areas). All of them. Explaining the situation and desperately hope that someone decides to help. If I could, at the very least, get her portion of the rent paid for a year, that would be fabulous ($2976.00, I calculated it). If I could manage to also have her bankruptcy payment paid for a whole year, that would be even better (that brings the total to just under five grand). I'm also going to bring it up to the MWC (the pagan discussion group I belong to), to see if they can spread the word to any of their contacts and possibly wrangle help from any of the pagan organizations around here. Though I'm not banking on that, because getting pagans to do anything all at the same time is a lot like herding ferrets (most people say cats, but I strongly believe that those people, unlike myself, have never tried to herd a business of ferrets).
If anyone reading this has any other ideas, or any experience in dealing with matters such as this (any of it, whether it be SSD or Medicaid or welfare or health insurance or charity or fundraising), please contact me through email (if you have it) or my LJ. I would be infinitely grateful and welcome any suggestions.
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(no subject)
Date: 2004-05-14 12:33 am (UTC)Is it solid food that she has a hard time with or is it everything? can she keep down Ensure & shit like that? I suggest trying to get some weight on her any way you can, bc regardless of what you do first, that weight's gonna make it hard. Also, can you get her medical marijuana in your state? That might help.
We got accepted for SSD on the first try, but we had to jump thru hoops for it. I've been told a lot of it depends on what your Dr. has to say. talk to your Dr. I don't fucking understand how they can turn her down.
My friend
(no subject)
Date: 2004-05-14 06:34 am (UTC)It's everything, not just solid foods. When she first got sick, back in 2002, we were having her drink Ensure. She stopped drinking it then because she was back in shape and doing okay. Now that this is going on, I bought her more (the weight gain kind) and she drank it for a little bit, but it makes her incredibly constipated. TMI, I know.
Also, can you get her medical marijuana in your state? That might help.
I don't think NJ does medical marijuana. The doctor wrote her out a script for Marinol, but so far, it doesn't appear to be doing much for her. I can very easily get her marijuana of the non-medical sort, but she's not very keen on the idea of smoking it. The comment I left to Chicanerys_Muse details that whole spectacle.
We got accepted for SSD on the first try, but we had to jump thru hoops for it. I've been told a lot of it depends on what your Dr. has to say. talk to your Dr. I don't fucking understand how they can turn her down.
The Dr. doesn't seem concerned that she won't get accepted for SSD, but I'm afraid they'll turn her down because my brother and I also live there. I make $9.00 an hour and he only makes slightly more then that. And I've read so many other people's stories about how they were turned down for similar reasons. It just makes me scared.
My friend d_r_o_n_e raffled off a quilt last year & donated the proceed to an MS charity. You should go poke her about it. Maybe we can do something similar? See if you can get your art homies donate stuff for a raffle.
Do you know if she had to get a permit for that raffle? Chicanerys_Muse brought up something similar. I'm interested in doing something of that nature, but between work (which just my regular schedule is 50 hours a week, then I have massive amounts of overtime) and taking care of my mom, I don't have any time or energy to work on any of my projects (which upsets me on numerous levels, I haven't done shit for MONTHS).
Also, can I link to this? Maybe some ppl on my list have ideas or would be willing to help you guys out some way.
Link away, Miss J.
Thank you for everything.
(no subject)
Date: 2004-05-14 07:10 pm (UTC)I'd offer to organise some stuff, but I'm thinking it would porbably be better done by someone more local. I will, however, be willing to donate some jewelry & stuff that I make to any ebay auction or raffle that gets worked out. I will also help get the word out & link to any paypal donation thingie you get, once that's set up. As your miss robin said, if we can get a buncha ppl to send you $5, that could help a LOT.
Since the quilt raffle went thru an already established charity, my friend did not need a permit, so it's a different situation.
You've got a lot of ppl who want to make this less sucky for you guys. I think we can get something figured out.
big love to you.
(no subject)
Date: 2004-05-15 01:47 pm (UTC)Thank you so, so much. For everything you're doing.
Do you think I should really set up a Paypal thing? Are people receptive to that or do they tend to automatically think it's shady business?
You've got a lot of ppl who want to make this less sucky for you guys. I think we can get something figured out.
Everytime I open my email and see the responses I'm getting, I'm amazed. It baffles me, truly.
Much love, Miss J.