(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.
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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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My thoughts on the Subject...
Date: 2004-05-13 10:43 pm (UTC)First and foremost, A seperate checking account should be opened, this way if people wish to make donations, it can go directly into that account alone. (this way, also, if some people wish to any type of fund raising it would go there as well)
As for fund raising, I am sure there are a ton of things we can look into. I am not sure exactly about how we could do it legitmately (but I do know people who do non profit stuff, so I am sure I can ask, and I am sure sicne the masons do a lot of charity work as well, they can probably do the same)
You can also do something like making dolls/knitting and the like where the profits go to all of this. I am sure some of us would be more than happy to contribute to the cause, by donating art and the like to it. Sell it on Ebay or put up a website for it. And use the seperate checking account for paypal and the like. We know enough talented people who I am sure who would be willing to donate time/talent to all of this. It is just a matter of asking, which I know it is something you are not good at (the asking for help thing..)
I am sure if you also go to the american cancer society thing, they may be able to help.
And on a slightly less legal note.. Have you thought about using pot for medicinal purposes on your mom? It may help increase her apptitie/ and decrease the pain. I know it works every well with paitents who undergo chemo.
So yeah.. that is all I ahve to say about that.
~jennie gump.
Re: My thoughts on the Subject...
Date: 2004-05-14 06:25 am (UTC)Yeah, I've thought of this before, but completely forgot to bring it up to my mother the other night. It would definitely help to have all charity/fundraising stuff separate from her regular account.
As for fund raising, I am sure there are a ton of things we can look into. I am not sure exactly about how we could do it legitmately (but I do know people who do non profit stuff, so I am sure I can ask, and I am sure sicne the masons do a lot of charity work as well, they can probably do the same)
For legitimate fund-raising, I'd have to get a permit. One of the ideas that Rowan gave me was to do this thing called a basket of cheer. It's where you get a bunch of people to each donate a bottle of liquor, then raffle off tickets for people to win the booze booty. All money from the raffle goes to my mom's bills.
She also suggested a 50/50, which is when you sell raffle tickets and whoever has the winning ticket gets half of the money earned from selling tickets. The other half goes towards whoever the raffle was being done for. Usually, the winner will just donate what they won right back to the person, but not always. And I'd be afraid of that happening.
You can also do something like making dolls/knitting and the like where the profits go to all of this.
I've thought of similar things, also. However, my dolls take an enormous amount of time to complete. And that's with me working on them continually over days and days. I no longer have the time or energy to undertake something of that scope. As for knitting, well, I am the SLOWEST knitter in the world. heh. I'd be willing to do something with other people involved, if people wanted to do that, but I just don't have the time or energy anymore to dedicate to making my own. I could probably put up a couple things I've already made, though there are many anymore.
It's still a very good idea, though.
I am sure if you also go to the american cancer society thing, they may be able to help.
Called them yesterday, when I was at work. The lady gave me a slew of phone numbers. Like the Patient Advocate Organization and Medicaid and Hill Burton. But, gave me no real help. I was a bit put off by the entire conversation, personally. I'll probably try them again today or tomorrow, see if I can talk to someone else.
Have you thought about using pot for medicinal purposes on your mom?
Ever since this entire thing started, two years ago, Todd and I have been campaigning for her to smoke pot. We're met with quite a lot of stubbornness. She doesn't like getting high or how it smells. The other night, when we had our discussion with her, we really pulled out the big guns on her. And I think I may have worn her down enough that she'll eat brownies, if I make them for her. But, it's still kind of touch and go.
She's been prescribed Marinol, however, to help with the appetite thing. She took one last night, but it didn't appear to do anything. So, I may have the doctor up the dosage.
Thanks for all your help, miss.