Tuesday, February 28, 2012

The Cost of MS

Susan Skoney

Do you need to vent? I do. I have just about had it with all the problems that having multiple sclerosis brings. And if the physical issues weren’t enough, the mental anguish caused by all the obstacles MS throws my way makes me really crabby.

Some of these hurdles are ongoing, like the financial havoc MS creates in my life.

I am completely disabled, but I am ineligible for Social Security Disability Insurance. Even though I have worked and paid into Social Security since I was 16, the quarters that the Social Security Administration looked at were more recent—the years when I was home caring for our children, and not earning income. Oh, well. If I live to be 62 years old, I can collect early retirement benefits.

I also don’t qualify for Medicaid because my husband’s income is too high. But is it really? Not when we figure in all the expenses of MS, such as my fabulous aide who comes every day to help me shower, dress, get to the bathroom, do laundry, take me to appointments … you get the picture. We pay for this help.

We also pay for health insurance and right now my health insurer is refusing to pay for my MS treatment. It allows 20 physical therapy visits a year, of course, with a co-pay. But 20 physical therapy treatments per year for a patient with MS are hardly adequate, so we pay privately for more. Then I need a customized brace for my ankle, but the co-pay is $450. My daughter also needs braces on her teeth, but we have no dental coverage. So my brace will have to wait.

Between extra help, co-pays, modifications to our house and the ever-increasing costs of medical insurance, MS has just about broken us financially. We now live paycheck to paycheck with an ever-growing stack of bills. So I’m really, really crabby. MS stacks the cards and it feels like everyone else is holding them. Something must be done. I’m thinking about that. But I’m also thinking about how beautiful my daughter’s smile will be.

For questions about SSDI or Medicaid, or to ask about financial assistance, call an MS Navigator at 1-800-344-4867, or visit nationalMSsociety.org/financialassistance.

20 comments:

  1. I understand the trials you are going through. My daughter's teeth are very bad; however, being a single mother makes it impossible for me to get her braces. It is amazing isn't it how our government system works? How is it that people qualify for food stamps and I don't?? I get no child support and just live off the disability check that I do get but they state that I do not qualify for any further assistance because my income is too high on disability. Ummm what? Really? We had to move out of our home and in to an apartment that allows us to hear everything the neighbors are doing including flushing their toilets because well you know... apparently we are living the good life income wise. I truly believe that our system is so backwards on who it helps! Did you know for instance... that a 19-year-old healthy adult male with no dependents qualifies for food stamps??!!! I have to pay out of pocket each month for my Medicaid and am also on Medicare including co-payments. I have two bad teeth and guess what? Medicare does not pay for dental? and the Medicaid that I pay for also does not cover it. Our dog chewed up my eye glasses but guess what? I do not qualify to get replacement eyeglasses unless I have cataract surgery according to Medicare because they do not deem them medically necessary? I am not even 40 yet ... what on earth do I have to look forward to; more bills that I can't pay, letting my daughter's self esteem go downhill even further, having to swallow my pride and go to the local food bank only to get past expiration date items (oh yeah boiling spag noodles to see the critters float to the top of the water was such a treat!) because you know.... the government thinks we are rolling in the dough and my income is too high.

    Sigh... guess that was my vent.

    Glad you are able to make your daughter have a beautiful smile.

    Thinking and praying for all my fellow MS'ers out there through their struggles.

    Kimberly in Montana

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    1. Kimberly in Montana I am Patty in Montana and I hear you. I was on SSI until my cousin turned me in, ya know we are faking, well I was asked to go through the whole gamit of tests again to prove my disability and I didn't have any money to pay for those tests so I was given the heave ho. Every day is a struggle, constant worry about where my next dollar is coming from. At least I am alone and don't have another person who depends on me.

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  2. I know exactly how you feel! Right after I was diagnosed I ended up losing my job. My husband was working 2 jobs, but the second place he worked was going south and he got out while he could. We can't pay but maybe 1/3 of our bills and may not be able to get SSDI. My husband makes too much for use to get any kind of food stamps or any kind of government help, except for SSDI, so hopefully we can get that to help a little. My MS has prevented me from being able to do a lot of the things I use to do and has prevented me from being able to work. It is very hard to not only manage my MS and the stresses and symptoms from that, but also all the debt collectors calls and any other financial stress that we have. And of course there is always the mother-in-law bugging us about when we will have kids. Like we don't have enough to worry about.
    But I am sure it will get better, eventually.

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  3. I'm totally right there with you guys....I don't have kids but I still have myself and my animals and bills to pay. I had to go off on disability from my work, luckily I had good benefits but it comes with a price. I had to file for Social Security, which took almost 2 1/2 years which in turn used up all my retirement money and then the health insurance premiums are unbelievable. I am very fortunate that I have a wonderful family that is able to help me out but I hate that I am 43 years old and have to depend on someone else to pay my bills. I do try to keep a positive attitude and I know that this too shall pass and life will become a routine again.....oh how I can't wait for that!!!
    To all of those with this disease know that you are not alone! We are all in this together and to the ones that are just diagnosed save save save your money because honestly you never think you are going to need it but it will happen, unfortunately that is this disease.

    Keep your chin up and thanks so much for this article!

    Alisa in Iowa

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  4. It makes my blood boil that a teenage girl who decides to hve unprotected sex and become pregnant can qualify for food stamps, WIC, Medicaid, and section 8 (rent assistance). There is help for those who have conscientiously made bad decisions and choices, yet there is no help or those who are in this situation through no fault of their own. People on SSI get not enough to live on, with rare cost of living increases, meanwhile if the woman on welfare gets pregnant again, she immediately gets an increase. Where is the logic? Reward more bad choices. I had another baby myself recently. Unfortunately, my hisband's employer didn't decide to give him an increase to make up for our new addition to the family. Something needs to happen to make life more tolerable for those who are already dealing with enough obstacles

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    1. Oh man I just noticed a bunch of typos. My apologies, I was typing so quickly on my iPhone and couldn't see so well. I do know how to spell husband lol

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    2. Wait... did I really just read that you decided to have another baby and you are upset that your husband didn't get a pay increase? How is this any different than a teenager having a child she cannot afford?

      Since when is it an employer's responsibility to pay for your children? Last I checked, you should ensure you can provide for a child *before* having a child.

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    3. I believe when she said that her husband didn't get a pay raise when they had another baby, she was being sarcastic. ie People on welfare get more money as they have more children. She wasn't actually expecting her husband's boss give him a raise because they had another child.

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  5. Hi gals (and I notice we are all women in this comment section). I send you my love and light. I know your struggles. I know your pain. I have been dealing with it for a very long time. I'm the 'old lady' now (at 68). The best advice I can offer is to find the funny things in all this ridiculousness. I won't change a thing, but it makes you feel a little lighter. I'm grateful to all of you for venting. Too often, we don't hear any of these very real everyday challenges.

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  6. She is just being sarcastic there about her husbands employer obviously but that is how it works for the welfare moms. The logic there is that the children should not suffer the parents bad choices is all. To be fair all the benefits they get don't add up to much at all although I agree the finacial troubles of MS sufferers can be overwelming. I know, I'm the child of a single parent who had MS and things were very difficult for a long time.

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    1. Phew... i didn't read the sarcasm at first but now that I reread it, I can see that maybe it is sarcasm.

      I am the spouse of someone very afflicted with this disease... he is now on his third drug in six months and, thankfully, this one seems to be working well with his body. My spouse is treated for MS exclusively through the VA. The care has been holistic and outstanding... and all costs are covered. It has made me a huge advocate of single-payer healthcare system.s

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    2. Well la-ti-da for you!! And yes I am being sarcastic. Men usually don't get MS they get LGD (Lou Gerighs Disease sp). Thankfully your husband is a Veteran and was fully covered. Women aren't as fortunate. Especially some who are single, lose their job, etc all above that I've read is true for me as as well. On disability and make too much money for anything else HA!

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    3. I am a veteran! I was dx'd last year at 59 with MS the VA will only pay for ms in first 7 years after discharge from service. So I got no help have been out 40 years! So men are in same boat. I work for now but it is getting harder by the day and my health insurance co pay for copaxone is $100.00 for on month.

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  7. I was diagnosed (finally) in 1996, after going through 10 years of diminishing physical ability. In order to qualify for SSDI, I had to work for 3 long years in a factory on the night shift ! I had to declare bankruptcy , lost my job, got divorced, but, here I am 16 years later, LIVING with MS !!

    So, remember , NEVER GIVE UP !!

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  8. I'm with you 110%. I live by myself, I have 1 son that lives with his dad because it's easier for now. I qualify for Medicare but I can't afford the payments they suck out of my disability check. I have tried to get Medicaid but I need to pay $997 out-of-pocket each month in order for Medicaid to pay for anything higher. I don't need Medicaid if I can afford that. But yet the chic across the hall with 3 kids from 3 baby's daddys get Food Stamps, Medicaid, reduced housing...is it really my fault that she met dead-beat dads? I would love to have something besides Ramen noodles & tuna salad. But over "SCREWED-UP" gov't t doesn't get it. There are so many people that are milking the system because their neck hurts, but yet they are seen lifting and pulling crap with no problem. UGH!!!! Oh well, hopefully my huge medical bills that I have accumulated within these last 2 yrs of no insurance, will be gone if I can ever get enough money to file bankruptcy.

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  9. I am so depressed from the med bills to employers firing you because you have to frequently call in due to my legs or eye's
    giving me issues. I am 32 with twin boys and a husband that went to nursing school because of me and this illness
    has done nothing but bring me down. I feel so alone all the time but it is good to know that there are others sick and tired of the government rewarding those that do not need it.

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  10. My heart goes out to everyone. I was diagnosed with MS 4 years ago when I moved to Austin. So far I'm pretty healthy. My physical condition is good,, just a few aches and pains and quite a bit of fatigue. The biggest future concern will be cognitive function, the memory, and whether I will be able to meet the demand my job has regarding multitasking and meeting deadlines. I will think positively but know in time I will not be so fortunate. I thank you for sharing your experiences. You are a blessing and sharing your thoughts helps me to respect my disease. I am not the most religious guy in the world, but I hope God will bring you peace. I'm sure God feels your pain and sees your misfortune. Peace to all.
    troy

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  11. Hi guys was reading everyones bloggs oh how I know how difficult financially this disease can b. I was diagnosed in 08 bcause my balance, and optic neuritis was so badi had to go for ssd, and man was that a very stressful 3years. Thank God for support from my significant other and family. I had to learn to except my limitations with this disease and find my own new scheadule . I had a difficult time adjusting to not working it was very challeging,but my overall health has improved. I just turned 40 in jan. Ibtake the good days with the bad and am grateful for the things I can still do.co.

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  12. I am so glad I found this blog. It was just a relief to know others are going through the same thing I am going through and it's not just some demon that only I am fighting. My finances are so screwed up I don't even look at my bills anymore. Medical bills are ridiculous. If I ever have the money I will file bankrupcy. I have applied for disability but have been turned down again and again and again. I didn't know you had to pay for medicaid? I thought that was when your medical was covered by the state. See, I've been fighting with MS and all its financial crap for 3 years and I am still learning stuff.

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  13. This issue is not that "welfare moms" are getting something they shouldn't have--the issue is that YOU are not getting the help you need! And that is not the fault of single mothers--that is the fault of politicians who deny you access to health care and choose to give tax dollars to multimillionaires and corporations rather than to the people who have worked hard and now need some help.

    Keep your eyes on the prize, people--it is not "the government" who is denying you help. It is the Republican party who would rather see you starve and die than to give you any help.

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