[anjelmarie]

I just found out I am going to be getting disability, I've been waiting almost a year for this. Now I find out I won't get medicare with it. I really needed it to cover my meds plus I may want try ECT. Right now I get help from the clinic I go to, they give me samples of my meds but sometimes they are out and I have to go without until they come in again. Walmart doesn't have a great selection of antidepressants. I'm upset now because I thought that now I won't have to worry about switching meds if I need to. Also, is anyone embarrassed to be on disability for mental illness. I have major depression and I don't think people think thats a legitimate illness. I don't want to tell anyone I know that I'm on disability because I know they will be disgusted with me. People really don't want to hear about my depression anyway. I have shared with some friends and family but they just say they are depressed too and still have to manage their life and do what they have to do. That makes me feel like crap. I now stay to myself and don't really talk to anyone. Just wanted to know how how others deal with being on disability.

[danstedak]

I was on disability for 3 years before I got my medicare. It is hard being on disability for a mental illness. People do think that you are just opting out of work and all. My stepdad still says that I need to let god heal my illness and go back to work. I just agree and let it go over my shoulder. I believe that if God was going to heal me then he would have done it sooner, like 24 years ago when I got sick. I have schizoaffective Disorder (basically schizophrenia and bipolar) as well as borderline personality disorder, ocd and am a cutter. It is really tough sometimes being on disability for MI, but you make it out to be the best you can.

[eskielover]

I have been on disability for my anxiety/depression since 1994....ended up being a permanent condition even though I had never had a mental health issue before I lost my career. Other things have happened along the years & now added PTSD to what I am dealing with.

I don't really understand your comment about not getting medicare with it. It takes 6 months to a year for it to kick in, but medicare in the long run is part of disability. I thought if they retroactive the disability that counts toward the time required for medicare, but might be wrong on that thought since you say you aren't getting medicare, I think you mean for the short term, but that it will kick in later on.

As for people knowing I'm on disability, I pick & choose who I let know that level of detailed information about my life. For some people, it's none of their business, for others, I only say something if it comes up in conversation.

You are right that people don't want to hear about your depression, but those people don't want to hear about anyone's illnesses not just your depression. In reality, people with diabetics don't go around telling people about it......depression needs to be handled basically the same way as any other illness as a personal thing & only discussed in the right place with the right people & anyone else, it's none of their business. In reality, you are managing your life & doing what you have to do. You are just managing it a bit differently than they are, but you still have to manage your own life & there are still things you have to do even though you are on disability.....sometimes it's even harder to manage it when on disability from my experience. Sadly, those people in your life have a very prejudice outlook on life which has nothing to do with reality.

I have days when I am fine & have no problems functioning, then there are others where I can't function for days. Lucky those days don't have a huge effect on my life, but they still stop me from functioning at times. Most of the time when that happens, I just say I'm having a "difficult day" & leave it at that.....they don't need to know what's difficult or how it's really effecting me....it just is is good enough & all they "NEED TO KNOW".

It takes some time to learn who it's safe to talk about your personal things to, but I guess to start with, it's really best not to share with anyone, then with time you will know who you are able to talk with about those details.

That's pretty much how my 16 years has gone while on disability.

[anjelmarie]

Originally Posted by anjelmarie

I just found out I am going to be getting disability, I've been waiting almost a year for this. Now I find out I won't get medicare with it. I really needed it to cover my meds plus I may want try ECT. Right now I get help from the clinic I go to, they give me samples of my meds but sometimes they are out and I have to go without until they come in again. Walmart doesn't have a great selection of antidepressants. I'm upset now because I thought that now I won't have to worry about switching meds if I need to. Also, is anyone embarrassed to be on disability for mental illness. I have major depression and I don't think people think thats a legitimate illness. I don't want to tell anyone I know that I'm on disability because I know they will be disgusted with me. People really don't want to hear about my depression anyway. I have shared with some friends and family but they just say they are depressed too and still have to manage their life and do what they have to do. That makes me feel like crap. I now stay to myself and don't really talk to anyone. Just wanted to know how how others deal with being on disability.

This is all new to me. I thought once you get approved for disability you automatically get on medicare. They did tell me I have a 2 year waiting period and I forgot to add that. I'm upset because I may want to try another medication but I guess I have no choice but to wait. As far as sharing with people goes I'm going to keep it to myself. I did tell one person and my boyfriend knows. Its just that I have been very withdrawn and have lost some relationships and I was thinking of trying to regain some of those relationships but I know they will ask if I'm working and I was wondering what I am going to say. I guess I will keep the disability to myself for now because I don't think it will go over well with people. It's a shame I can't be open about it with people I was close to. Thanks so much for sharing your stories with me, I appreciate it.

[Rhiannonsmoon]

((((anjelmarie))))

Glad you got the disabilty support it should put your mind at ease a little. It can be very hard when others don't fully understand mental illness and how disabling it is at times (like most of the time).

Methinks honestly that it scares people because they still have the movie "Psycho" in their heads (thankyou Mr Hitchcock) and other movies that have similar themes. People really do have an exaggerated idea of what menta illness is and it is either over the top or nothing at all. They don't see depression as a mental illness, rather a condition which gets better and doesn't return (oh I wish). And people also mistakenly equate unhappiness with depression which is wrong.

Keep your head up anjelmarie you don't have to tell anyone anything about disability it is your business and no one elses...

Rhiannon

[anjelmarie]

Originally Posted by Rhiannonsmoon

((((anjelmarie))))

Glad you got the disabilty support it should put your mind at ease a little. It can be very hard when others don't fully understand mental illness and how disabling it is at times (like most of the time).

Methinks honestly that it scares people because they still have the movie "Psycho" in their heads (thankyou Mr Hitchcock) and other movies that have similar themes. People really do have an exaggerated idea of what menta illness is and it is either over the top or nothing at all. They don't see depression as a mental illness, rather a condition which gets better and doesn't return (oh I wish). And people also mistakenly equate unhappiness with depression which is wrong.

Keep your head up anjelmarie you don't have to tell anyone anything about disability it is your business and no one elses...

Rhiannon

It is a shame that it has such a stigma. I remember Oprah had a show on about depression once and the headline said, "Father kills self and family, the truth about depression". I wrote her show and complained saying, "Thanks Oprah for helping to end the stigma". She did another show later that was a little more informative. I am learning to keep things to myself even with people I feel close to because some people just don't get it. Thanks for your supportive words.

[Rhiannonsmoon]

How are you doing anjelmarie?

[NuckingFutz]

I have something that may help. When you get your meds, go to the manufacturers websites and look very carefully for a place to go if you cannot afford your medication. A lot of manufacturers offer this as there are so many people out there in your situation. As far as telling others, I just tell people I am retired. The ones I cant be honest with I really do not care what they think. I would also check out if you thought about going on foodstamps or signed up for supportive housing? There are a lot of ways to make that check stretch farther. You can do it!

[Fresia]

I was fortunate in that my Medicare qualification was retroactive to include my waiting period for the time it took for the appeal process. During this waiting/appeal process though I did qualify for the state Medicaid assistance for health care and prescription drugs (which is federal) but you have to file through the state Health and Human Services Dept /Welfare Dept for Medicaid to get into the system. You may have already done this or might be something to consider to help in the interim.

I didn't tell people about the Medicaid or the disability now, except as a need to know basis. It would be just like I don't discuss my salary when I'm working, none of their business.

[(JD)]

If you find a medication that you've been on long enough to know that it helps you, contact the manufacturer. They have a limited number of "free" prescriptions they give out to people who can't afford them.

I waited 2 years before receiving medicare. Later I realized I could apply for medicaid in my state. This pays for what medicare doesn't. And once you do get on medicare, both medicare and medicaid will usuallt pay for any doctor visits, medications, and hospital visits (incl. ECT) at offices that accept both insurances. It really helps.

I've been out of work for over a year, but before that, I could only do small part time jobs. Fortunately, that is where disability helps, and combined with medicare and medicaid, it can really be beneficial.

You may want to check your county's resources for mental health and substance abuse. They will have a website stating what they do offer help with, plus phone numbers!!! Call those numbers, and ask for further resources, links, databases, and community help centers. Be assertive and don't back down until you get the amount of help YOU want!! You will soon be very amazed at the vast help that actually is out there... including someone who can help you get on medicare! or medicaid!

Good luck. You can do it. I know it!

Wildflower88

[farmgirl]

I applied for disablity one time and was denied. I decided not to appeal and try again to work. I did try for another 12 yrs, but I never stayed at a job very long or I didn't work at all. I have Borderline Personality disorder, depression and panic disorder. I know have an attorney and am applying again. I can take better care of my mental health not working. You should not feel embarrassed about being on disability for mental illness, but I do understand. Society has made it very difficult for people to accept that a mental illness is an illness just like if you were a diabetic, or had cancer etc. There is such a stigma attached to having a mental illness, although it is getting better. My dad comitted suicide at the age of 49 in 1998, he was also diagnosed Borderline but in his generation it was such a shameful thing to talk about. It led to a deep depression followed by him overdosing. I am new here but am thankful to have found this site where we can talk about our illnesses with others that understand.

[sunsetsunrise]

hi Anjelmarie, I am so sorry this is happening to you. If I had a magic wand, everyone would get the help they need.
Annonymous 29348 talked about what I want to say. The state I live in has great health care insurance for low income people. Many states do offer some coverage for low income residents. In my state its actually much better coverage than medicare. So I agree with Annonymous and Fresia's suggestion. Perhaps you have looked into this already. I didnt know about my state and what it offered for many years. Even though I thought I had looked into it enough. Finally someone who is extremely resourseful directed me to the right person to help me get in state support for health care and medications. It was the best insurance I ever had, by the way.

Some ideas re how to find out if your state has any health care support you are not aware of is to
~give you contact your state dept of insurance and explain your situation.
~You also might try contacting your state Health Care Ombudsman's office.
~ Or contact united way ( usually their phone number is 211) to find the most expedient way they know of to learn about your options for low income people in your state.

I think you know that medicare will be offered to you 2 years from when you first applied for disability. It took 2 years for me to get on to disability. So I was offered medicare as soon as I was accepted on disability. Because I am low income, the state I live in picked up the premiums copayments and deductable for all medicare -- including part D (drug plan).
If all else fails, I agree with Nucking and JD re contacting manufactures of the drug you need to take. you can go online to find the info re how to do it. Or you can call the united way. they should have a way to direct you to the right people who can help you to file. These huge pharmesudical corporations do offer help to low income people who qualify for assistance. They would mail forms to you to fill out.

Finally, I think there should be a word for people who have adverse, degrading reaction to talk of mental illness. I am not sure what the word would be. but I do believe that, just as with homophobia, its the fear of being ill oneself that keeps others from compasssion when hearing about or discussing it. I personally try to never talk about it with most people. I do not want to be the recipient of their mis-information or fear. Good luck and blessings Anjelmarie and everyone else here who is trying to navagate the confusing and often all too exclusionary health care system. ( sorry this was so long )

[Rhiannonsmoon]

Hello wildflower,

I think you will find that most of the services are posted on here and from different states and counties. There is a lot of help available and the members here have been wonderful in tracking them down and posting them for everyones benefit. Good luck with your situation.


Hello Anjelmarie,

It's good that you are going for disability again, I really hope you are successfull and that you benefit from it by being able to care for your mental health properly. Just you hang in there and post here as much as you need to for your support network; that is what we are here for, to help each other as much as possible

.

[anjelmarie]

Thank you everyone for your support it means so much to hear from all of you, i am deeply touched. I got medicare cards in the mail and they said i am enrolled already and it should be active in November I have to pay $110 out of my disability though and I have to subscribe to a prescription plan to get meds, i don't know if that costs more money but thats where things are right now. I'm still struggling with the what to tell people dilemma. I'm not going to tell anyone anything but then i have to deal with why aren't you working, and are you even looking questions. People always talk about their jobs and usually they ask about yours. Especially my family and friends (the few I have left). I have been avoiding people just so I won't have to talk about it which doesn't help my depression because i'm isolating myself. I don't know what to do about the situation, i don't really like lying to people. Recently I told someone I was out of work and looking. I'm afraid someone is going to offer to help me find a job where they work or something. What would I say then? Anyway thanks for all your kind words I really really appreciate the support. Anjelmarie

[sunsetsunrise]

anjelmarie, I was told the same thing by medicare. that I would have to pay $110.00 per month premium and then pay for drug coverage in addition to that, if I wanted coverage for drug. however, there are special state subsidies for low income people who receive medicare. My state has picked up all premiums and also deductables and copayments because I am low income. I believe that each state is different. So perhaps you will not have to pay the premium (s). Since this is not starting until nov 1 you do have time. But you may want to check it out now. I am not sure how you would check it out except to call social security at 1-800-772-1213 7am to 7pm M-F. of you could try to call medicare 24/7 phone line at 1-800-633-4227. And ask them to give you phone number in your state where you can find out what subsidies there will be for you.

I hear ya re feeling much more isolated. this whole process has left me extremely isolated. I no longer even call people on the phone which is hard considering I am agoraphobic. Perhaps real friends will not judge others for having to be on disability?? I need to get over the humilation. But thats my lack of compassion toward myself. Safe hugs for you

[Crew]

anjelmarie what a pretty name

I agree with SunriseSunset. I am on that and I only pay usually $3.10 for a prescription.

Take cAre,
CreW

[imgamehere]

I have a list of websites that can help with medical expenses and prescription costs. However, because I haven't made 5 posts yet, I can't include the liinks in this message. But, this is very useful information. So in order to provide the links, I guess I' going to have to send 5 replies first. So here goes . . .

[chiggins814]

i am on disability in NJ and the waiting time is 2 years for medicare

[sunsetsunrise]

Originally Posted by chiggins814

i am on disability in NJ and the waiting time is 2 years for medicare

If you are low(ish) income, then perhaps you can find out through the state of NJ if there is affordable insurance that they subsidise. I paid a fortune in premiums before I was told I could get very low cost excellent health care insurance through the state of VT. I am not saying all states are as good with this as mine. But perhaps something could be available that you do not know about.

When I got on to medicare I lost this very generous state subsidised insurance. Perhaps you could check with your state to find out if anything is avaialble, if you are low income. Good luck.

For what its worth, for me medicare is not so great. My naturopaths office ( I pay out of pocket for her) is trying to find a therapist for me to see who is covered by medicare,(and also medicaid that picks up my copayment and deductable because I am low income) The answer so far is there are no therapists in my area who are covered by both. So, now that I have gotten on to psychiatric disability I am not able to be in therapy. I even have to pay 50% copayment to go to the psychiatrist. Because medicare only covers 50% of psychiatric fees. It feels like a cruel system. I am sorry if someone who is reading this works for "the system". This is just my expereince.

[DancingAlone]

anjelmarie,
when i received my disability in 1996, the waiting period for medicare was one year. now it is two.

i go to a state psychiatric facility to see a pdoc and it is based on my income (they take my medicare). i only pay $8 a visit to see her, $0 for the nurse, and the required support group once a month is also free. however, they don't take medicare for in-patient.

about medications, if you have a Krogers in your area, there is a long list of medicines that are $4 a month (generic) and for three months at a time $10. Walmart also has a very long list of generic medicines that are also $4. some other grocery stores have meds for $3. none of these require insurance or a co-pay.

whe you get medicare, and plan to use the medicare part d prescription drug plan (of your choice) you have to pay around $40 a month just for the "privilege". this is only cost-effective if you are on a brand name drug that costs an arm and a leg (such as Seroquel--won't go generic until possibly 2013--as soon as it does, i will lose the part d plan and go to Krogers if they sell it there).

you can also try:
http://www.needymeds.org/drug_list.taf

(I have heard negative things about that one…I think you can’t have any other assistance with meds to qualify. But I think, not sure, you can also get medication assistance from DFCS--department of famly and children's services)

take care and good luck

[anjelmarie]

Originally Posted by DancingAlone

anjelmarie,
when i received my disability in 1996, the waiting period for medicare was one year. now it is two.

i go to a state psychiatric facility to see a pdoc and it is based on my income (they take my medicare). i only pay $8 a visit to see her, $0 for the nurse, and the required support group once a month is also free. however, they don't take medicare for in-patient.

about medications, if you have a Krogers in your area, there is a long list of medicines that are $4 a month (generic) and for three months at a time $10. Walmart also has a very long list of generic medicines that are also $4. some other grocery stores have meds for $3. none of these require insurance or a co-pay.

whe you get medicare, and plan to use the medicare part d prescription drug plan (of your choice) you have to pay around $40 a month just for the "privilege". this is only cost-effective if you are on a brand name drug that costs an arm and a leg (such as Seroquel--won't go generic until possibly 2013--as soon as it does, i will lose the part d plan and go to Krogers if they sell it there).

you can also try:
http://www.needymeds.org/drug_list.taf

(I have heard negative things about that one…I think you can’t have any other assistance with meds to qualify. But I think, not sure, you can also get medication assistance from DFCS--department of famly and children's services)

take care and good luck

Thanks everyone for your advice. I didn't have to wait after all. They gave me Medicare Part A and B in Nov. Then I just joined an HMO plan with BC/BS where I don't have to pay a premium every month as long as i use the doctors listed in their book and stay in my State. Plus I get discounts on meds but they have to be meds on their list also. I was getting my meds at walmart but i found out that Pathmark and other places also have low price meds so now i go to Pathmark. I have to pay a small copay when i go to the doctor and also if i go to the ER and if I'm hospitalized. If i went with a better plan where i can go anywhere and don't need to pay copays it would have been almost $200 i would be paying a month so what i picked should be ok. I also am looking into alternative health care and i found a place that is a school and the students work with the doctors and come up with a treatment plan for you. It is a herbal and accupuncture school. I don't mind trying other things because i have a lot of health issues and i don't feel i get taken seriously sometimes with doctors or they don't help me so i am hoping i can get some help at this place. Again thanks for all your advice.

[Perna]

Good explanatory article: http://www.disabilitysecrets.com/wil...isability.html

[Jewels]

good info perna...i am sure this helps the most in knowing what disability actually goes into effect when...as well as when the medicare portion of it will go into effect for those who are new to the disability payments.

anjelmarie...don't forget to go to your local human resource center and apply for medicaid and food stamps...if you get less than $1000, you should be able to get food stamps...and apply for SSI as well...I was getting both SSDI and SSI when I was single, but lost it when I got married and didn't get back on it after I was single again...even though I should have...but my daughter gets money because I get SSDI, and we get food stamps and medicaid as well. I wish you well...

Jewels

[bebop]

medicare kicks in at 25 months I believe but it does not cover medications. you have to get a drug plan to go along with it. I use an advantage program that takes care of all my medicare including medications.