I've recently been approved for SS Disability, not due to my ileostomy, but definitely due to the complications resulting from that surgery and being in ICU and rehab for over 6 weeks. I came away from that experience being physically challenged with constant hernias erupting and repairs that didn't work very well to the point that I'm physically unable to lift more than 5lbs (forget a gallon of milk, hey?). Anyway, while I was looking at possible options to reduce my out-of-pocket costs since SS doesn't pay very much and I need ostomy supplies...I found a website called http://www.needymeds.org. This is an amazing organization where you can reduce your prescription costs to almost nothing. For this, you can still have medical coverage - and still receive the benefits of lower-costing meds which are exactly the same as what you are taking now. Also on this site, there are diseases categorized by cause (like IBS, ileostomy, cancer, etc.) and if you click on your own "disease" you will find resources that are just right for you. Since I have an ileostomy, I clicked on that and it brought me to another website that offers every ostomy supply imaginable - for FREE - you are only responsible for paying the postage and handling fees! This is for the UNINSURED only, but at least we now know that there is something we can count on should we become uninsured for whatever reason. So, for those in the USA who are uninsured/uninsurable and getting low on hope, I urge you to check out needymeds.org for your ostomy supplies. You won't find anything better than what they are offering. I hope this helps to relieve some of the burdens that you might be carrying. All the best!
Wow, thanks for sharing this info. I've been paying out of pocket for my supplies for the past 6 years. It costs me over $40 for a box of 5 one-piece pouches - and that lasts me just over a month.
* Update * I checked it out, but unfortunately, the group providing assistance with ostomy supplies is for Florida residents only.
Oops, I didn't realize it was for FL residents only! Sorry for giving you hope on cheaper supplies! Since I live in Orlando, FL, I guess I never even thought about whether it was a state-specific organization or not...I just thought it was for every uninsured person. Guess I better go back (if I can even find my blog) and announce that I was wrong. Thanks for correcting me!
Tricia
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PS - I'm sorry to have encouraged everyone out there...through another ostomate, he let me know that it was for Florida residents only... since I live in FL, I never even thought about it being state specific! So, if you live in FL and are uninsured, the same will be true for you. I still would go onto the website to see if you can look up your specific "disease" and find more resources for you. Again, I'm sorry I was ignorant that this program was only state specific!
Hi Green Eyed Lady, as I read your first post I had that wonderful feeling that some poor souls would be finding some financial relief, but at least Floridians will if they read this and can take advantage of the offer, and your heart was in the right place and I'm sure there will be many folks appreciating what you were trying to do and I admire you for trying. As a Canadian we have it pretty good for most people but there are still some folks that fall through the cracks and are hurting with the cost of appliances. Have a good day Green Eyes. Ed
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Hi Ed,
Thank you for your kind words. Yes, I had my heart and hope involved in this subject. Here in the USA, products are so expensive (up to $600/month) that I have no idea how the uninsured Ostomy Mates deal with that - because obviously, we can't go without our products!! By me facing losing COBRA next February, I'm seeking solutions to cover my products that I can afford...meanwhile, nobody can afford the monthly costs of COBRA which are usually $600/month or much higher if you are a "family" vs. me being "single", and you still have to pay the deductibles and co-pays until you reach the outrageously high out of pocket deductible each year (doesn't roll over). When you've finally reached that deductible, you get medical paid at 100%. But, with these deductibles being so costly, it's extremely difficult to maintain any kind of medical coverage here and still be able to live. I'm glad that Canadians with National Health are not facing the same situation as here. I used to live in the UK where we also had a National Health program and you could also purchase private medical insurance through your job. So between both, all medical/dental/optical were paid for. I have no idea why the USA hasn't instituted the same here. They're trying to get one program up and running, but it won't happen until 2014 and it's still so costly that the costs seem no different to me. My only income is SS Disability, so I've had to face early retirement living solely on the small pittance I receive from them. How can people like me continue to pay high premiums and outrageous products costs? Oh well, that's why I do as much research as I can - to help myself, and during the journey, be able to help others who are facing the same situation. Again, thanks so much for your understanding and kindness.
Tricia
Thank you for your kind words. Yes, I had my heart and hope involved in this subject. Here in the USA, products are so expensive (up to $600/month) that I have no idea how the uninsured Ostomy Mates deal with that - because obviously, we can't go without our products!! By me facing losing COBRA next February, I'm seeking solutions to cover my products that I can afford...meanwhile, nobody can afford the monthly costs of COBRA which are usually $600/month or much higher if you are a "family" vs. me being "single", and you still have to pay the deductibles and co-pays until you reach the outrageously high out of pocket deductible each year (doesn't roll over). When you've finally reached that deductible, you get medical paid at 100%. But, with these deductibles being so costly, it's extremely difficult to maintain any kind of medical coverage here and still be able to live. I'm glad that Canadians with National Health are not facing the same situation as here. I used to live in the UK where we also had a National Health program and you could also purchase private medical insurance through your job. So between both, all medical/dental/optical were paid for. I have no idea why the USA hasn't instituted the same here. They're trying to get one program up and running, but it won't happen until 2014 and it's still so costly that the costs seem no different to me. My only income is SS Disability, so I've had to face early retirement living solely on the small pittance I receive from them. How can people like me continue to pay high premiums and outrageous products costs? Oh well, that's why I do as much research as I can - to help myself, and during the journey, be able to help others who are facing the same situation. Again, thanks so much for your understanding and kindness.
Tricia
Yes, I also used to live in the UK and did not give supplies a thought as they were free, also all medications were free because of the ostomy. Now living here in Florida and needing to have my reversal reversed, and another ostomy put in, I am putting it off because of the cost of supplies. It is a big problem.
So, then while living in FL, you can still purchase your ostomy supplies through needymeds.org, right? You don't pay for the products, only the shipping and handling. This is if you are medically uninsured and not with major medical through the company you work for. I guess us Floridians with ostomies are pretty lucky compared to other states that don't have such programs. I wonder what other ostomates who are uninsured do in order to get their supplies. It's so costly if you have to purchase them out of pocket...even the large producers/distributors only give you 10% off the entire purchase!
I never knew that as no one has mentioned that to me. I am actually due to have surgery in New York so maybe that is why the doc there maybe did not know. But the doctor who referred me there did not mention it. I have applied for Medicare as I had to give up work in January. I had been putting the op off as supplies was one of my concerns. I have had almost every kind of ostomy before, but in the UK and then reversed, but now need it refitted. Thanks for the info, that was lucky for me I saw your post. - Meg
Hey Meg,
I'm so glad that the information was useful to you! I only stumbled upon Needymeds.org while I was surfing through Social Security to see what benefits were out there until I can get Medicare in 2014. So, it was amazing when I found the site and I hope it helps others out there like us who need our supplies!
Take care,
Tricia
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Hi Tricia,
You are so thoughtful to provide this information in any case. I sure hope you can continue to receive your meds and supplies easily. Someone touched on the subject of insurance and I have to say that I was very disappointed by the arguments people made against the single payer/public option. If most people only knew how quickly one's financial security and hope of continuing work can be taken away, we would not be having this discussion. As for SSD, it is crazy that they make you wait for a year or two in order to be eligible for Medicare. Whose idea was that? Can you tell I'm a tad bitter about all of this? I just keep smiling and waiting! And hoping that the health care law stays intact until 2015, so that I can buy insurance again.
Thanks for the effort to share some good news.
Warm regards,
Tamarah
You are so thoughtful to provide this information in any case. I sure hope you can continue to receive your meds and supplies easily. Someone touched on the subject of insurance and I have to say that I was very disappointed by the arguments people made against the single payer/public option. If most people only knew how quickly one's financial security and hope of continuing work can be taken away, we would not be having this discussion. As for SSD, it is crazy that they make you wait for a year or two in order to be eligible for Medicare. Whose idea was that? Can you tell I'm a tad bitter about all of this? I just keep smiling and waiting! And hoping that the health care law stays intact until 2015, so that I can buy insurance again.
Thanks for the effort to share some good news.
Warm regards,
Tamarah
Hi Tamarah,
It took me (with having a lawyer) 9 months to get SSDI in the first place. I had already been turned down twice during these 9 months from my application date. I am one of the lucky ones, though, because it sometimes takes 1-2 years to get approved, so disabled people possibly have no income during this time frame. Also, if you are turned down twice, you will need to appeal the court's decision...which can take up to another 15 months to be seen/heard by the courts to hopefully turn around their original decisions. Again, I was lucky in that I followed instructions and got even more input from my doctors and had additional tests run to prove that I truly am disabled. It took this to get SS to turn around their opinion and I did not then have to go to appeal court.
Also, once you are approved for Disability, SS removes the first 5 months of your entitlement to paying you back from the original date of your claim. So, again your entitlement is reduced by these 5 months.
As for receiving Medicare, I have no idea who made the decision that you are not entitled to receive Medicare for 24 months! Oh, this waiting period also commences after the 5th month of your entitlement...so it's really 29 months before you qualify for Medicare! Geez, the government sure doesn't make it easy for disabled people!
Oh well, these situations can make us hot on the subject, but SS is run by the Federal government, so there's nothing we can do. I'm just praying that SS will still be around to receive our 100% entitlement through 2036 when it is expected to pay out only 75% of your entitlement. So, it shouldn't affect me - but it will for others younger than me!
Unfortunately, SS wasn't supposed to be anyone's entire income at retirement. It was only designed as a supplement to our income (which we paid into all our working lives). We all were supposed to have assets saved/invested to make up the difference in our income at retirement. So, unfortunately in my case, I'm having to plow through these assets now that I saved for retirement - which is before full retirement age of 66! So, I'll have no assets left by then to supplement my SS income. So back to square one!
On the upside, because we are living solely on SSDI with a very low income, most of us are within poverty guidelines and then we somehow qualify for some other perks...Medicaid (if you have no assets over $3,250), free Weatherization Programs for your home through your County, one free cell phone with 250 free minutes (safelink.com), help with paying our utility bills (LIHEAP), free or reduced medical/dental/optical clinics in our County, etc. So, there is some hope out there for us after all. Meanwhile, it's taken me a month or more researching what help is out there for those of us living within the poverty guidelines.
Hope some of this information helps.
Tricia
It took me (with having a lawyer) 9 months to get SSDI in the first place. I had already been turned down twice during these 9 months from my application date. I am one of the lucky ones, though, because it sometimes takes 1-2 years to get approved, so disabled people possibly have no income during this time frame. Also, if you are turned down twice, you will need to appeal the court's decision...which can take up to another 15 months to be seen/heard by the courts to hopefully turn around their original decisions. Again, I was lucky in that I followed instructions and got even more input from my doctors and had additional tests run to prove that I truly am disabled. It took this to get SS to turn around their opinion and I did not then have to go to appeal court.
Also, once you are approved for Disability, SS removes the first 5 months of your entitlement to paying you back from the original date of your claim. So, again your entitlement is reduced by these 5 months.
As for receiving Medicare, I have no idea who made the decision that you are not entitled to receive Medicare for 24 months! Oh, this waiting period also commences after the 5th month of your entitlement...so it's really 29 months before you qualify for Medicare! Geez, the government sure doesn't make it easy for disabled people!
Oh well, these situations can make us hot on the subject, but SS is run by the Federal government, so there's nothing we can do. I'm just praying that SS will still be around to receive our 100% entitlement through 2036 when it is expected to pay out only 75% of your entitlement. So, it shouldn't affect me - but it will for others younger than me!
Unfortunately, SS wasn't supposed to be anyone's entire income at retirement. It was only designed as a supplement to our income (which we paid into all our working lives). We all were supposed to have assets saved/invested to make up the difference in our income at retirement. So, unfortunately in my case, I'm having to plow through these assets now that I saved for retirement - which is before full retirement age of 66! So, I'll have no assets left by then to supplement my SS income. So back to square one!
On the upside, because we are living solely on SSDI with a very low income, most of us are within poverty guidelines and then we somehow qualify for some other perks...Medicaid (if you have no assets over $3,250), free Weatherization Programs for your home through your County, one free cell phone with 250 free minutes (safelink.com), help with paying our utility bills (LIHEAP), free or reduced medical/dental/optical clinics in our County, etc. So, there is some hope out there for us after all. Meanwhile, it's taken me a month or more researching what help is out there for those of us living within the poverty guidelines.
Hope some of this information helps.
Tricia
Hi again Tamarah,
I forgot to speak to the subject about the supposed medical reform by 2014...I'm not sure this is going to happen with so many people against it. If it does, the insurance premiums will still be too high for some of us (who are over 55) to join in the program. I'm not even sure whether younger disabled people can afford to pay these premiums while only having SSDI as their income. If you look at the pre-existing medical policies either through HIPAA or High Risk Pools, we HAVE TO BE WITHOUT any medical insurance for at least 6 months and we also have to prove that no other insurance carrier will cover us (due to our disabilities)...so, how can we afford to be without medical insurance for 6 months in order to qualify?? We can't live without our supplies, so what do we do in the 6-month interim? We have to find other ways to be able to afford our supplies. That's why I'm so glad that I found the free ostomy website (through needymeds.org) that only charges for shipping/handling for our supplies...but again, you have to be uninsured to receive this. In my case, I can have my COBRA extended an additional 11 months due to the fact that I became disabled within 60 days of the start of my coverage. These 11 months will bring me to the exact date that I will start Medicare. Keep in mind, though, that I'm paying HUGE COBRA PREMIUMS and deductibles which most people can't afford...so plowing through my assets is how I pay for my medical coverage and ostomy supplies! What else can I do? It's not like I can go without the supplies. I just had a kind of funny thought...we should all show up on our Senator/Governor's door and just undo our bags so that they can see we can't live without our supplies!
Take care,
Tricia
I forgot to speak to the subject about the supposed medical reform by 2014...I'm not sure this is going to happen with so many people against it. If it does, the insurance premiums will still be too high for some of us (who are over 55) to join in the program. I'm not even sure whether younger disabled people can afford to pay these premiums while only having SSDI as their income. If you look at the pre-existing medical policies either through HIPAA or High Risk Pools, we HAVE TO BE WITHOUT any medical insurance for at least 6 months and we also have to prove that no other insurance carrier will cover us (due to our disabilities)...so, how can we afford to be without medical insurance for 6 months in order to qualify?? We can't live without our supplies, so what do we do in the 6-month interim? We have to find other ways to be able to afford our supplies. That's why I'm so glad that I found the free ostomy website (through needymeds.org) that only charges for shipping/handling for our supplies...but again, you have to be uninsured to receive this. In my case, I can have my COBRA extended an additional 11 months due to the fact that I became disabled within 60 days of the start of my coverage. These 11 months will bring me to the exact date that I will start Medicare. Keep in mind, though, that I'm paying HUGE COBRA PREMIUMS and deductibles which most people can't afford...so plowing through my assets is how I pay for my medical coverage and ostomy supplies! What else can I do? It's not like I can go without the supplies. I just had a kind of funny thought...we should all show up on our Senator/Governor's door and just undo our bags so that they can see we can't live without our supplies!
Take care,
Tricia
Morning Tamarah,
I like the point you made that we should all go to Washington and show the Senators what we deal with daily!
What I can't figure out in this country is they will pay for women to sit home and have baby after baby...and lord knows where the father is. But someone with a serious health problem, they don't want to hear it?
Go figure!
Take care of yourself.
Spade
Hey Spade,
Yeah, they seem to acknowledge the "poor" and offer them welfare, food stamps, free housing, free medical, and even cash assistance. What this is saying to the people is "get unemployed or have 10 kids that you can't support" so that we can take care of you while you are living in poverty. If that's the situation we are in, then we need to tap into what services our local and federal governments do offer to us while we're living within the poverty levels. Since my only income is SSDI and my COBRA payments are outrageous, I had no other alternative but to seek other avenues where we can get help (including our medical supplies). Most of the employed are part of a major medical plan where their supplies are paid for. Most of the unemployed don't have medical coverage - especially with pre-existing conditions that we have. So, unless we get SSDI and wait the 29 months to get put on Medicare, we're sunk in between. We can't get pre-existing medical policies because we have to wait 6 months to qualify, and they are very expensive, too. I think our only alternative is to find other resources to help us as well as to stockpile supplies while we are insured so that we don't go without if we lose our jobs or medical coverage. Geez, someone just said to me "This life sure isn't for Sissy's"...and I think that about sums it up.
Tricia
Yeah, they seem to acknowledge the "poor" and offer them welfare, food stamps, free housing, free medical, and even cash assistance. What this is saying to the people is "get unemployed or have 10 kids that you can't support" so that we can take care of you while you are living in poverty. If that's the situation we are in, then we need to tap into what services our local and federal governments do offer to us while we're living within the poverty levels. Since my only income is SSDI and my COBRA payments are outrageous, I had no other alternative but to seek other avenues where we can get help (including our medical supplies). Most of the employed are part of a major medical plan where their supplies are paid for. Most of the unemployed don't have medical coverage - especially with pre-existing conditions that we have. So, unless we get SSDI and wait the 29 months to get put on Medicare, we're sunk in between. We can't get pre-existing medical policies because we have to wait 6 months to qualify, and they are very expensive, too. I think our only alternative is to find other resources to help us as well as to stockpile supplies while we are insured so that we don't go without if we lose our jobs or medical coverage. Geez, someone just said to me "This life sure isn't for Sissy's"...and I think that about sums it up.
Tricia
HI Tricia, Spade, and anyone else!
This has turned into a very interesting discussion. Sorry it has taken me so long to reply. I understand the point about plowing through assets. I went through a divorce right before the diagnosis, which led to my ostomy, and will always have to worry about that cancer returning in addition to managing the lymphoma I was diagnosed with during the divorce. It's been a crazy few years, and dealing with the pouch and all that entails is just the tip of the iceberg, but I try to stay positive and keep smiling. I really want to return to work, but as I never really had a "career" to speak of, I am in the position of looking for jobs that I can do where I can have some flexibility. I really feel like I am being held back because it seems everything I am qualified to do is somehow not possible for me at this time.
Anyway, I feel really hopeful since the SCOTUS decision about the PPACA came down. I thought I was filing for divorce at the "right time," and then the market tanked and there went 45% of the IRA, then illness, bankruptcy, had to sell the house and move to another state. I have looked at high-risk pool insurance, and it turns out I can't buy it because you have to go straight into it from COBRA, and that got screwed up during the D. So what other choice do I have? My story is so long and convoluted I would never try to tell it here, and I sure made some bad decisions, but hopefully that's in the past. I approach decision-making very carefully these days, and that is a challenge since I've always been kind of a free spirit.
As for your point about welfare and all that? I totally understand where you are coming from. I try to remind others what friends and family members have said to me, and that is that those programs are in place to help people like us who have hit a rough patch. It has been extremely difficult for me to find myself on public assistance, but I thank God every day that it's been there for me. My mother was a social worker, and she saw the very worst kind of poverty and spent her entire life helping people. I am all for the programs designed to help people, and the biggest problem has been that they were never completely funded because there is and always will be an underlying societal attitude that blames the impoverished for their own poverty. It's an age-old story. That said, I've also known personally and anecdotally the person you speak of who sits at home, having baby after baby, on food stamps, receiving extra money for kids who have "disabilities" like ADHD and so forth. It's infuriating, I know. These are the people who were raised in "the system" and know better than anyone else how to milk it. But what can we do? I would never take food, shelter, and medical care from a child in order to punish the parent for milking the system forever! The only solution I see in all of this is Medicare for all no matter how old or young. We are supposed to be a civilized nation (U.S.), and I believe greatness is measured by how we care for the neediest among us. I would love to go to work, but I am in the situation where poverty has been forced upon me because of medical bankruptcy. If I allow it to bother me constantly, I can become very unhappy very quickly. I hope the system changes for the better, and our children and grandchildren won't have to battle these issues. It will be wonderful when they can focus on their God-given potential and make the world a better place.
And yes! Stockpile those supplies. I get as many as I can as often as I can, and that goes for all medicines, too. I have been without meds and down to one pouch too often to ever take that for granted again. When the insurance company I had before sent the wrong supplies, I gave them to my WOCN nurse because I couldn't send them back, and I could not use them. I plan to upgrade on this site, too, so I can be a part of the supplies exchange. I know there's one somewhere on here, but I can't participate until I have a full membership. Soon!
Thanks for letting me vent!
Tamarah
This has turned into a very interesting discussion. Sorry it has taken me so long to reply. I understand the point about plowing through assets. I went through a divorce right before the diagnosis, which led to my ostomy, and will always have to worry about that cancer returning in addition to managing the lymphoma I was diagnosed with during the divorce. It's been a crazy few years, and dealing with the pouch and all that entails is just the tip of the iceberg, but I try to stay positive and keep smiling. I really want to return to work, but as I never really had a "career" to speak of, I am in the position of looking for jobs that I can do where I can have some flexibility. I really feel like I am being held back because it seems everything I am qualified to do is somehow not possible for me at this time.
Anyway, I feel really hopeful since the SCOTUS decision about the PPACA came down. I thought I was filing for divorce at the "right time," and then the market tanked and there went 45% of the IRA, then illness, bankruptcy, had to sell the house and move to another state. I have looked at high-risk pool insurance, and it turns out I can't buy it because you have to go straight into it from COBRA, and that got screwed up during the D. So what other choice do I have? My story is so long and convoluted I would never try to tell it here, and I sure made some bad decisions, but hopefully that's in the past. I approach decision-making very carefully these days, and that is a challenge since I've always been kind of a free spirit.
As for your point about welfare and all that? I totally understand where you are coming from. I try to remind others what friends and family members have said to me, and that is that those programs are in place to help people like us who have hit a rough patch. It has been extremely difficult for me to find myself on public assistance, but I thank God every day that it's been there for me. My mother was a social worker, and she saw the very worst kind of poverty and spent her entire life helping people. I am all for the programs designed to help people, and the biggest problem has been that they were never completely funded because there is and always will be an underlying societal attitude that blames the impoverished for their own poverty. It's an age-old story. That said, I've also known personally and anecdotally the person you speak of who sits at home, having baby after baby, on food stamps, receiving extra money for kids who have "disabilities" like ADHD and so forth. It's infuriating, I know. These are the people who were raised in "the system" and know better than anyone else how to milk it. But what can we do? I would never take food, shelter, and medical care from a child in order to punish the parent for milking the system forever! The only solution I see in all of this is Medicare for all no matter how old or young. We are supposed to be a civilized nation (U.S.), and I believe greatness is measured by how we care for the neediest among us. I would love to go to work, but I am in the situation where poverty has been forced upon me because of medical bankruptcy. If I allow it to bother me constantly, I can become very unhappy very quickly. I hope the system changes for the better, and our children and grandchildren won't have to battle these issues. It will be wonderful when they can focus on their God-given potential and make the world a better place.
And yes! Stockpile those supplies. I get as many as I can as often as I can, and that goes for all medicines, too. I have been without meds and down to one pouch too often to ever take that for granted again. When the insurance company I had before sent the wrong supplies, I gave them to my WOCN nurse because I couldn't send them back, and I could not use them. I plan to upgrade on this site, too, so I can be a part of the supplies exchange. I know there's one somewhere on here, but I can't participate until I have a full membership. Soon!
Thanks for letting me vent!
Tamarah
