Social Security Disability

[renidrag]

Quick update. I was reading another thread titled Lung Involvement and couldn't help but notice the price of some of the meds make them unattainable. I am on SSDI and Humana for the Drug plan, this has worked out well for a year though my Symbicort costs me over $300.00 every three months, along with my other meds which are reasonable. In February I received a letter from Medicare stating I was eligible for "extra help" with my prescriptions, next day I got a letter from Humana stating the same thing and all I had to do was call them. I was thinking some of you could call local SS office and ask about this. I did not look for this it just came to me. So now all my generic prescriptions are $1.20 and ALL name brands (Symbicort) are $3.60. What a country, hope this helps some folks.
Dale

[Debbie C]

Hi Dale, I was on extra help for a couple of years but since they increased the amount you get for SS, I now make too much money ( that's a joke ) so I was denied it. I have bcbs as my insurance and have to meet $150.00 dedutible before the drugs are cheaper. But I agree everyone should try to apply for it, it really does help with scripts.

[windchime]

Quick update. I was reading another thread titled Lung Involvement and couldn't help but notice the price of some of the meds make them unattainable. I am on SSDI and Humana for the Drug plan, this has worked out well for a year though my Symbicort costs me over $300.00 every three months, along with my other meds which are reasonable. In February I received a letter from Medicare stating I was eligible for "extra help" with my prescriptions, next day I got a letter from Humana stating the same thing and all I had to do was call them. I was thinking some of you could call local SS office and ask about this. I did not look for this it just came to me. So now all my generic prescriptions are $1.20 and ALL name brands (Symbicort) are $3.60. What a country, hope this helps some folks.
Dale

I applied for this for my Mom last year after my Dad passed and thankfully she was approved. It has helped her tremendously. Depending on income, people may qualify for help with their medicare part ?, the one that gets taken directly out of your SS check. Can never remember which it is. Anyway the $105 or whatever it is paid for by the state for my mom. So that was another little help that we appreciated. If you go to your state web site you can usually sign up online. Of course that depends on the state, but it's somewhere to start. You may find other help on the state websites too. Worth a look.

[VictoriaBrady]

I too live in Ohio and having trouble getting SSI disability. Lots of paperwork..going to hearing next. Atty hasn't done anything yet except send me forms to fill out. Can you offer any help as to what to say. I live in my "bubble" and don't like to see myself sick.

[windchime]

I too live in Ohio and having trouble getting SSI disability. Lots of paperwork..going to hearing next. Atty hasn't done anything yet except send me forms to fill out. Can you offer any help as to what to say. I live in my "bubble" and don't like to see myself sick.

I was approved without an appeal or hearing. I would say just answer the questions honestly but base them off your worst day. You say you don't like seeing yourself sick, but I would not appear at the hearing all chipper. Quiet and introspect would be good. How old are you if you don't mind my asking? Ohio seems to be a difficult state to get approved in. I'm on some FB groups and Ohio people have it rough with approvals. Good'luck at your hearing.

[annekat]

I'm 62, about the same as Cindy, I think, and I also got approved easily without a hearing. I think age is definitely a factor. Good luck, and yes, focus on how your symptoms really affect you, including the extreme fatigue, and you might even have to educate them about the seriousness of the disease and the difficulty of getting into remission, and that even then, you are not out of the woods. Follow Cindy's advice, be honest, and don't act like you are bending over backwards to convince them, but just inform them of the realities in a calm, low-key sort of way.

[VictoriaBrady]

I am 48. This has been going on for about 10 years. I worked until Feb last year. General Manager, I worked a lot of hours but with a lot of leeway, shut light out when migraine/headache. Keep ice on face when in pain or tissue in nose when bloody drainage. Got sick often and had nothing left for family and friends. Now that I don't work I have more energy to take care of myself and spend awake time with family. (Still don't do with friends like I use too). SSDI lists Wegs as one of the approved impairments but denial states since I can walk sit or stand I can do other work. Why do I have to prove my disability if it's listed already. I didn't even know wegs was a SSDI approved disability till I saw their website. Feel like I'm asking for a handout not something I've paid into since I was 18. I don't really know how this forum works but I'm glad I found you guys. Wegs is hard to explain and since the tumor was removed from my face, "I don't look sick". I have learned so much from reading on this site. I'm not alone with the fatigue and lack of concentration/memory. I have been on predison/metha combo for about five years now (50 pounds heavier) before that it was cellcept/pred and have been doing Rituxan infusions last couple years. If the wegs doesn't get you the side effects/warnings of all the meds do.

[annekat]

My sympathies are with you. I have heard that having an illness on the list of impairments does not guarantee approval. But sheesh, I can walk, sit, and stand and do some work, and they approved me! It is good that you are not currently working, as that would be a disqualifier. However, they do allow a person to do some work and earn up to around $1000/mo. and still collect the benefits. So, their definition of "work" is earning any amount over that, from work. You can still have other income such as rentals, investments, family contributions, etc.
Anyway, it seems to me that if they are going to allow someone to work in a limited way, that obviously those people can usually walk, sit, and stand, so those criteria are way too strict and unreasonable. They should allow that a person has lost the capacity to work full time but still can do a little work and function in their daily lives. You are only 10 years younger than I was when I got approved. So it seems there could be a chance, if your lawyer and you present the case well and are lucky. So all I can say is good luck!

[Jaha]

I'm sorry that you are having such trouble getting approved. The lawyers should be helping you fill those papers out. The trouble with lawyers are that they want it to drag on so that they can make more money on the back pay. They added Wegener's around 2010 and then in 2012 added some more dx's. Do you have any other illnesses to add to the list, like anxiety or fibromyalgia? The questions are very repetitive and I filled it out on my own it was very exhausting. I used that word a lot on the questionnaire it was true. Wishing all the best at your hearing. Oh, one more thing, make sure you state that you will be on chemo for the rest of your life.

[annekat]

Another thing was just pointed out in another thread, the one about "when to stop working". It should be recognized by anyone who deals with a WG patient that too much working, too much stress, can easily delay the process of recovering from the disease, and can cause relapses. The lawyer and the judges at the hearing should all be aware of this fact.

Since some WG cases are more severe than others, this can vary with individuals, and I'm sure there are some Weggies who cannot work at a job AT ALL, EVER. Yet they still can probably walk, sit, and stand......