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  1. #1
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    Default Fundraisers/donation/drives for Chronically Ill? (Looking for advice, not donations.)

    I really hate to even post this, And to be clear I am not posting asking more donations or anything like that here. I am hoping for opinions or ideas to help the situation. I am not attempting to solicit donations, I mortified I didn't put that in here in the first place and I am so sorry if it appeared that I was.

    I am finding this to be embarrassing, but at the same time I know it isn't my fault and I know something needs to be done. I just feel so defeated and like I am mooching. I am the type who tries not to take help from anyone. I'd rather give it.

    Most if you know I have Chronic Pancreatitis. I'm 29 and I've had symptoms for as long as I can remember. The past year and a half I've been in and out of the ER and hospital, surgeries, tests, etc to see if we can come up with a better plan. The best we could do was put in a PEG G/J tube to give my pancreas a rest. (No food in my stomach so it doesn't get stimulated, which should eventually help with my symptoms for awhile.) What happens when I need to eat again I have no idea.

    I am looking at a life long struggle here and that's fine. It can always be worse. However, I had to medically retire so my income was cut quite a bit. We live near DC and can't move due to hubby's job. He makes great money but we are underwater due to the medical bills from all this. If we got rid of those and had a clean slate, we'd be ok. We could start saving again and hopefully never get in this situation again. I know there was nothing I could do, I was sick but it still sucks.

    My family wants to hold a fundraiser to help with medical bills and living expenses. I also thought about setting up a blog with my medical updates that people can also donate money or items via that.

    I just feel…I don't know. It makes me feel like a failure. We worked SO hard to get where we are in life and I know our credit has taken a hit, we are paycheck to paycheck and have no savings. If something else happens we are screwed. I've cut out what I can expense wise and it helps, but not that much.

    My tube feed supplies is going to range from $250-$450 per month after insurance. And this is for many months. I asked for a reduction and help from the company and insurance but they can't do anything. The company said they can give me extra time to pay, but that's it. I have gotten the bills lowered as much as I can with the hospitals as well too.

    I also have more surgeries ahead of me and life long medication. I am still in the process of applying for SSDI, so that will take some time.

    So, this fundraiser and online blog and donation site….good or bad idea? And does anyone have any other ideas outside of bankruptcy?
    Last edited by SFrost; Mar. 12, 2014 at 12:45 AM. Reason: To be clear I wasn't asking for donations here. Just advice and thoughts.



  2. #2
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    Have you tried to apply for some kind of disability or at least looked into it? I don't know how medicaid works I'm guessing it's based on income but also worth a look. http://medicaid-help.org/medicaid-eligibility/

    As far as fund raising, not a big fan, it only addresses immediate needs and won't help in the long term and will quickly lose steam once people have given once or twice. You need a long term plan/solution.
    "My treasures do not chink or gleam, they glitter in the sun and neigh at night."
    ~Gypsy saying


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  3. #3
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    SFrost...try contacting some of the organizations listed on this website.

    https://www.needymeds.org/copay_aos....=list&state=nt

    Here's another: http://www.cdfund.org/Copay-Assistance.aspx
    Join the Clinton 2016 campaign...Hillary For America. https://www.hillaryclinton.com/


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  4. #4
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    I am on long term disability from my job since I am medically retired. But the salary gets smaller each year until the third year. I am trying to get social security disability. I do qualify, but we know how that goes. If I get denied I will get a lawyer.

    Hubby's next raise will be a substantial one. It isn't guaranteed when he will get it, but once he does it will go to savings.

    Currently my needs are one time immediate. Since I had a whole slew of procedures and bills from those they need to be paid. I won't have to do many of the expensive ones ever again since it was to determine if I was a candidate for a big surgery. I am, but I opted not to have it since it has so many complications still. I can change my mind at any time though.

    My other option is to pull from my thrift savings. I plan on this and paying off a lot of my bills that way, but if we can use that to get debt free, and with the assistance of donations we should be ok. It just a big chunk of debt that needs to be paid. Then we can try to get back on our feet and start saving again.



  5. #5
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    .
    Last edited by Macimage; Mar. 13, 2014 at 11:08 AM.


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  6. #6
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    No, we drained our savings. The only "savings" we have is what is in my retirement fund, the extra one, my Thrift Savings Plan. So, it isn't truly a savings account. We have drained all out actual savings. If I had savings left in the bank I'd happily use them.

    My point was a fundraiser (not my idea) was to help with medical bills to get our heads above water. Given insurance hasn't covered a good deal we have a ton of out of pocket expense. Am I comfortable with "handouts"? Not really, but this is one of the options that has been presented as a solution. And I pointedly stated it was really embarrassing for me to even consider this option. But if it is the only one left, then what?

    As for what I meant by debt free, I would want to pay off my medical bills, or what I can. Then with our income back to where we can handle all the bills start to pay off everything else. Then we can start building our savings accounts back up over the years like we did before.

    It isn't like I am wanting people to just give me money. It would involve lots of work, a charity type event, raffles that type of thing. Not that it in my mind makes it different, but it isn't me standing there asking for cash. Nor is it me even putting on the event. It was something my Mom did for another person and wanted to do for me.

    And my husband has also volunteered to of back over to the war zone to help pay our large bills and then, again, any extra put into a savings account. (Like, i.e., we need a new roof, I get sick again, but hopefully have a secondary insurance plan this go round f I am approved, or whatever else. Living paycheck to paycheck when you are chronically ill isn't a good idea or a responsible one. I want to try to avoid that. But not at the cost of my husband or my time with him.

    So to be clear, your post kinda made me feel like you thought I was just asking people to pay my bills while I do nothing to pay them myself and that I have money I don't want to spend. This isn't at all the case. The number one rule is never pull from retirement plans and I will have to do just that. I should have been clear when I said savings, I was talking about the money in my retirement Thrift Savings Plan.

    Maybe I am being too emotional but your post made me feel even worse about the situation. I wasn't at all saying I had savings I don't want to or won't use. Pulling from my Thrift Savings (again retirement) is an option I will do and an avenue that will be exhausted. So I am not just asking for help without looking at every solution I can find on my end. (The fundraiser was NOT my idea. It was my family's. I'd never do that, but if they do it and set it up even if I say no, what can I really do? And they want to help. This is one of the ways they feel they can. And yes, they would donate, organize, etc. They have also came to take care of me recently.)

    I was simply asking for thoughts on these situations, and what other types of options people have to help pay off debt. Not that I want people to give me money and spend theirs and keep mine.

    I am not trying to come off mean to you in my answer to your post, but I feel like you just assumed I was being freeloader taking money when I don't need it. Do I WANT to pull from my retirement since I am no longer able to work and won't have much of one except my pension when I hit the retirement age many decades away? NO. No one wants to take out of their retirement funds. But I am because I have to. Perhaps the name of the plan made it sound like I had some savings account I didn't want to use, but I don't. Each and every one is tapped out. My retirement savings is my next option. And I will use it because I have no choice.

    Just like I have to consider letting my husband go to a war zone and be in danger because of this. THAT I would try to avoid with a fundraiser. Who wouldn't? I love him and need him. I don't want him killed, hurt, or alone in a dangerous place.

    I hope my post better explains what I meant by the savings aspect and wanting to pay off all my debts. (Which I won't be debt free. I'd have my mortgage.) The other stuff we were great about paying down until the medical bills piled up. So we were in a good position until now.

    I honestly hate I even posted this now. I wanted advice and options, not to be getting a somewhat snide reply that was uncalled for. Plus I feel like you didn't really read what I meant in my posts. I want to look at ALL other options before letting people do a fundraiser. I hope this post clears up any confusion.

    And if you didn't mean it in a snide way I do apologize. It just read that way to me and it was offensive. I know this is the internet and I need a thick skin but I posted for helpful ideas and suggestions. Not to be made to feel like a horrible person who is made out to have all this money I am not using. Because that's simply not the case.

    Also understand that my illness is progressing in such a way I may die. So this isn't some small injury where I am milking it. I am chronically ill and could have an attack that kills me at any time. I almost died a few years ago. Not the this matters, but my point with it is that I am not just saying I am in debt because I have some easily curable illness. There' not cure. I will die an early death.

    Other, please if you have any other resources or ideas as to what else I can do let me know.
    Last edited by SFrost; Mar. 12, 2014 at 12:37 PM.


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  7. #7
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    you are not a horrible person.
    you are a person to whom something horrible has happened.
    I support you if you decide fund raising is the route to take.


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  8. #8
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    Blogging about your condition and procedures is a great idea.

    See if your library has the book "Click Millionaire". You'll have to skim over the annoying parts where he tells you over and over how fabulous he is, but the core ideas in there could work for you. Who knows, you could become the next mini-WebMD for your particular condition. Even if not... you can still help others by writing first-person articles about the tests, procedures, and daily life with your condition.
    --
    Wendy
    ... and Patrick


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  9. #9
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    Quote Originally Posted by SFrost View Post

    My other option is to pull from my thrift savings. I plan on this and paying off a lot of my bills that way, but if we can use that to get debt free, and with the assistance of donations we should be ok. It just a big chunk of debt that needs to be paid. Then we can try to get back on our feet and start saving again.
    With all due respect, you are most likely asking folks who do still carry debt to help you with your big and unfortunate bills so that you can become debt free. Why isn't your medical care a really, really appropriate use of your savings?

    ETA: I read your reply and i now (kinda) understand what you meant.

    Still, I think the appealing to strangers thing is usually done by people who have nothing. No home equity, no retirement, no family resources, expenses that far exceed all state forms of support, no working person who will get a raise in the future.

    It sounds like you do have some of those. I understand not wanting to use them, but that's not the same as not having them.

    I guess as long as you are up front about your balance sheet so that folks with more (or less) than you can be making an informed decision when they donate, why not ask?
    The armchair saddler
    Politically Pro-Cat


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  10. #10
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    For me no I would not do a fundraiser. I would for my animals though.

    I don't know what your job was but can you not work at all, even from home?
    Is there any kind of home business you could get started with and at least make a little money with?


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  11. #11
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    it seems staying alive is a full time job for the op, and I for one think that if her family wants to go the fund raising route--why not let them?
    especially if it keeps her hubby at home and not back in a war zone!
    and perhaps her mom really needs to be doing something, anything for her severely ill daughter--I know I would!
    it's not like people will be forced to contribute, only those who wish to do so will.
    I really don't see the why the big fuss.


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  12. #12
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    There is a group at our church that raises money for their Relay for Life team in memory of their father. Their biggest draws are homemade (unbaked) pizza sales. Usually one during the season of Lent on a Friday, one around Super Bowl time, and one in the Fall. Not sure where they buy the ingredients, but they just assemble and box the pizzas. The last time I think they sold 150 at $10 (for plain) and $12 (for pepperoni) each.

    Also, since you are posting on here, I'm assuming you are a horse person. Would you be able to do a horseback paper chase or poker run?
    The only thing the government needs to solve all of its problems is a Council of Common Sense.


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  13. #13
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    Have you looked into filing a chapter 13 bankruptcy? Your retirement savings wouldn't be touched, and, in most cases, you would be able to keep your house. Since your husband is expecting a large raise, it sounds as if you'd be able to handle a payment plan without too many problems.

    Sorry you're having to worry about finances when you're dealing with a serious and painful medical condition.


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  14. #14
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    Pulling from Thrift Savings for this is a good reason, but still I've always been taught to leave retirement alone. Clearly I am going to for sure break that rule.

    As to ever working, no I can't really. I am allowed to do some side jobs taking pictures but I don't even take those any more because I can't know how I will fill 5 minutes from now so scheduling is out of the question. That was one of the biggest issues. I could wake up and tolerate my symptoms and be at work for a few hours and then have to be rushed to the hospital. Stress is a HUGE trigger of my attacks and my job was up there in stress. I'm not a reliable worker due to the illness and most of the time I have to nap if the pain is bad, or try to. We thought about working from home, but with the in and out of the hospital and dr.'s appts it would be unlikely I could keep it up.

    Asking people for money who may have debt themselves….this was one of my issues. The fundraiser will be family, friends and extensions of those from my understanding. I come from a small town and my mom would hold it there. Probably the local beach restaurant/bar where 99% of the town goes. Get a band, have raffles, a door fee, those types of things that with the understand proceeds go to my medical bills. (Which I'd have copies of.) People there are upper middle class and up. (Not the that really matters.) And no one would donate if they didn't want to. It would be a "charity party at x place, fees are x, events are x,y,z. All are welcome donations go to medical bills". So no hounding anyone for anything. The only positive I can see is speaking to people about the disease and how it has altered my life. I'd tell people to watch their health, care for themselves, educate them on the disease and let them know that no matter what with any disease things aren't hopeless. (People don't get what I mean when I say this, but even if the worst happens and you die, things will be ok. You just won't be here anymore. It doesn't make sense to a lot of people, but for me I think it helps sometimes.) I want people to know what life with a chronic illness is like since it effects so many people who suffer in silence. Family/friends often don't know how to handle it and do want advice, but don't have resources. I'd like to give them some by my experience and point them to places that can help. I'd also like to donate a portion of my donation to research on Chronic Pancreatitis. Even if it is a small donation, I feel like it would be the right thing to do.

    I do think the blog would help other a great deal. I know I always looked for things like that when I was diagnosed. They were a huge help and got me to some of the great dr.'s I have.

    I love the horse paper chase or poker run for fun. But my barn is here and the fund raiser is there. They might do something like the but I'd never ask and it would have to be their idea. Since I am not as close to them as the people I grew up with it makes me even more uncomfortable. I haven't ridden since July. I so hope that changes soon!!!! I can't sell my horse one because he is a stress reliever and a member of the family. And he's unsellable anyway. He has hock arthritis, SI issues and low ringbone. Amazingly he is sound, knock on wood. But he'd never pass a PPE and I'd never let him go to a place where they will not treat him like glass with his health issues so he has a long comfortable life.

    I have looked at Chapter 13 as a last resort. If we have to go that route I will, but want to avoid it at all costs. But I understand ya gotta do what ya gotta do.

    Like someone said, everyday is a struggle for me to even be here. And I'm okay with that. But even fighters get worn down sometimes and need help. This is something that my family knows will help. They have also stepped up to come care for me here. Coming in from all over the country. I am surprised and humbled. We aren't that kind of family for the most part (touchy, lovey, etc) so this has been wonderful to feel supported and the extra care is awesome.

    Thanks to all for the suggestions. If you have more keep em' coming.


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  15. #15
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    If your family sets it up, they set it up. Accept whatever the fundraiser makes.

    I would never donate to a stranger's health fundraiser, but I did donate for a close friend of my family's child, and a wonderful coworker. Most likely keeping it to people who know you, or at least of you, would be more successful unless there's something so compelling that total strangers would be moved to give money (which I think is getting rarer, but hey, sometimes things go viral like with that bus driver lady who was bullied by the horrid kids).
    Proud Member Of The Lady Mafia


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  16. #16
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    Hey, OP, I'm sorry you illness is not getting better. I'm still hoping that a pancreatic transplant can and will make you whole again. And soon!
    Meanwhile, just let people do a fundraiser for you. Here in Savannah, there are always fundraisers for cancer patients, burn victims, etc. While you feel like people are pitying you, and some are, it will help to get $ to pay bills and relieve some of the stress from your illness. And you know that stress is very bad for pancreatitis. Don't be too proud to ask for help from people who will help you out.

    Let me know where to send a dribble. I do not do Facebook despite everyone telling me to do it. But I can send a little bit of $ to help you out since you are a nice person. Cloudy and Hattie just had their spring checkup and annual shots and his yearly multiple X-rays which should make him light up at night, so it won't be a lot of $, but I can send a little to help with the bills.

    Glad you have a wonderful husband who has stayed with you through all of this. I know what you've said about your blood relatives blaming you for being sick. Your husband is so much better than they are. Hang in there. I still think that those 2 NYC hospitals or Emory will do a pancreatic transplant for you. And then you can pay it forward.

    ETA I know that several other Cothers have mentioned their chronic illnesses. And there is one nice Cother who has not mentioned her chronic and panful illness. Thank God her employer has kept her on staff. My boss in Atlanta, now deceased, kept people on his staff who were terminally ill until they could no longer be driven in to work. I love the concept of employers taking care of their employees. GEt on disability and social security and we'll see if a pancreatic transplant will solve your problems. Those of us who have had healthy lives need to realize how lucky we are. And we need to help those who haven't been so lucky.


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  17. #17
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    Quote Originally Posted by cloudyandcallie View Post
    Those of us who have had healthy lives need to realize how lucky we are. And we need to help those who haven't been so lucky.
    Ditto.
    Join the Clinton 2016 campaign...Hillary For America. https://www.hillaryclinton.com/


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  18. #18
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    .
    Last edited by Macimage; Mar. 13, 2014 at 11:09 AM.


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  19. #19
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    Quote Originally Posted by cloudyandcallie View Post
    Hey, OP, I'm sorry you illness is not getting better. I'm still hoping that a pancreatic transplant can and will make you whole again. And soon!
    Meanwhile, just let people do a fundraiser for you. Here in Savannah, there are always fundraisers for cancer patients, burn victims, etc. While you feel like people are pitying you, and some are, it will help to get $ to pay bills and relieve some of the stress from your illness. And you know that stress is very bad for pancreatitis. Don't be too proud to ask for help from people who will help you out.

    Let me know where to send a dribble. I do not do Facebook despite everyone telling me to do it. But I can send a little bit of $ to help you out since you are a nice person.
    You have been so, so kind to me throughout this whole illness. Listening, researching and just letting me vent. You're advice has always been sound and I am so thankful to "know" you. (I wish it was easier to meet the people you like on COTH in person.)

    You are so kind to offer to send something, but I would rather have you keep being such a wonderful and supportive internet friend. How about if the fundraiser happens I'll send you the link to any raffles or things like that. Kiss your horses for me and tell them I said they need to take care of you because the have a wonderful Momma!
    (((hugs))) I really do wish you knew how grateful I am for your kindness.


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  20. #20
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    Quote Originally Posted by Macimage View Post
    I am truly sorry that you did not care for my post. However, as a couple without any retirement savings and large medical bills, it is hard to relate to the fact that you would rather have others pay your bills than use your retirement savings.

    My husband also offered to go overseas for very dangerous assignments with the very real possibility of being killed so I do understand exploring all options.

    And yes, in better times we donated to those less fortunate but those folks truly had nothing (ie no retirements savings, no home, no horses, etc.).

    As I said, my personal opinion is that we would not fund raise to pay off our bills. I am sorry that my opinion upsets you and makes you feel badly. Perhaps that is something for you to think about.

    Your title stated you were looking for advice, not donations so I gave my advice and opinion. I guess I should have stayed away from this thread.

    If your family and friends want to help you out, I think that is great but to do a fundraiser for those "upper middle class and up" folks to donate is just not on my personal agenda.

    My post was not mean to be snide, I just have a different viewpoint than you do.

    I wish you well.
    Goodness, I stated multiple times I WILL be using the retirement fund to pay the bills. It was never my intention not to use it. My point was pulling from retirement is usually one of those things people say to never do if you can avoid it. Clearly, I am pulling out the retirement savings before ANY fundraiser would happen. And ANY money from the fund raiser would be paid directly to medical expenses. But remember, I expenses like that include travel to Johns Hopkins. Sometimes hotel rooms there for back to back procedures, gas, my food for my tube feeds. Tape and gauze. special products that have less oils in them because oil and fats trigger pancreatitis. Special medical divides unrelated to the pancreas but the need for them because I can't have certain ones in my body. Then there is another medical expense of pills so I can eat real food to the tune of $2000 per month. Looks like insurance no longer covers them.

    Then the fact I'll eventually end up a brittle diabetic, or have pancreatic cancer. Or I have a surgery that might help but most people have more issues after it.

    I've sold my expensive horse. The other horse is staying for several reason. One, he isn'ts sellable health wise. He's flashy enough I might be able to find a buyer, even with all the bad things he has he's sound. But I wouldn't be able to know what a new owner would do with him and potentially shorten his life. I won't sacrifice his life and health after all the time he's cared for me. Been steady when I was so so sick. That horse was a gift from my FIL who wanted me to have a safe horse. We worked and trained that horse together. He passed away in 2011 of suicide. That horse is all I have left of him alone with my memories. Even though my husband doesn't ride, the horse also helps remember happy times with his dad. So, maybe it would help to sell the horse, but emotionally that isn't even a possibility. My friends and family know this.

    And I don't know how long I'll live. I want to be with my husband as long as I can and spend time loving him as much as possible so when I'm not here and he is he knows he was so, so loved. I want him taken care of too.

    Given the nature of my husband's work, we would have some serious fallout if we file for bankruptcy. (If we have to, we would regardless.) He has to have a stable home and a stable life. So my situation has the potential of hurting his career. That may not make sense to people, but we need our personal and professional affairs in order. He could lost his job and then what? Is it okay to hold a fundraiser then?

    It wasn't that you felt it was the fundraiser/donations were a bad idea that bothered me. It was the way you made it seem like I was some low life, money hungry, and lazy person. You are very much entitled to your opinion but I felt that you were missing my clear points that we are looking at EVERY option. Not just a fundraiser. So I don't need to examine why I feel the way I do about your responses. I know why, you were rude even though I stated I was in fact doing some of the things you seemed to think I wasn't and was just jumping to "handouts" and not doing any work to pay my bills.

    I think that pulling from my retirement, cutting daily life expenses, looking at bankruptcy, looking at selling some of valuable items, having already sold my upper level ISH prospect, thinking of allowing my husband to go to a war zone, etc. I'm doing everything short of selling my house, horse, cars and pets. None of those items are an option to let do for various but responsible reasons.

    And my point about the upper middle class. I wasn't saying "no one without money allowed at the event". I was saying that I come from an area, or rather our social circle, falls into that socioeconomic status. I got the impression you felt I was going to be hitting up strangers, people who are struggling themselves and those who might not have extra to donate-that is not the case. Given I am not setting this thing up, but I know how things work in the area, everyone is invited. They can donate if they want, if not that's cool too. Getting to see them would be great, and getting to speak about my disease would be great too.

    I get you have a different point of view and that's fine. It makes the world go round. But the way the post seemed to kick me while I was down seemed unfair to me. Partly my fault for not giving every detail so confusion could be avoided.

    I just want to live the remainder of my life physically comfortably and knowing my family doesn't have to take on my burdens after I die, or when I am at the end of life. Again, on poster, Suz I believe, pointed out that I am working each day to stay alive. That's exactly correct.

    Some days are not easy and I wonder if I'll see tomorrow. My early morning was in the ER making sure I had no major changes to the pancreas, hoping I didn't have sepsis and praying I'd get to be okay and go home. So, my view point is I am trying to just live.

    No one seems to have a problem when there are cancer fundraisers, or fundraisers for children, or ones for people with other diseases. And a lot of those situations people have NOT exhausted all the options like I am trying to do. The fundraiser was the first thing they did. I don't judge them for that at all. I am just glad they could get help in any way could. And regular bills and medical bills needed to be paid in those cases. People had to still try to save money in case something else happened.

    The advice I was looking for was not to attack the fundraiser idea, it was what other options are out there for people in my situation. Not to make judgements about if I am going about spending my money properly, or taking and being greedy, or whatever else. I was hoping for solid ideas on hey, we made cook books and proceeds went to the person in need or stuff like that.

    I do appreciate your opinion, but I don't appreciate they way you seemed to have painted me in a negative light. And it isn't just me who thought that. I got several messages stating that. But that doesn't really matter.

    You have your thoughts and opinions and I have mine. Maybe we can agree to disagree and let the thread either die or maybe others will have some ideas of things we do to help the situation.


    1 members found this post helpful.

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