Financial issues, anxiety, I need some help. Please. Anyone

[Panegyric]

I posted this in the SSID forum but there's so much going on that I wanted to post more generally. I'm usually bad at asking for help but I've known I'm in over my head for a while now and the hits just keep coming. I've been falling, had the worst MS hug I've ever had (was suffocating for days). The new symptoms keep coming (though I haven't had optic neuritis since starting rituximab) but no new active lesions to explain it.

So its infusion month and I received a packet in the mail informing me that I have to complete a full review of my disability. I was approved 6 years ago and wasn't expecting to have to do a full review like this, not to mention being able to do all the packet required. I called for an extension so I have till the 17th of June to complete it.

Anyway, I don't work. I am alone, no real support from family, just a couple good friends that help me out. When I was first diagnosed I had been living abroad was visiting for my best friends wedding and lost my eyesight. I paid for my bills out of pocket because I thought it was the right thing to do.. well.. I put myself in massive debt and went completely broke before insurance kicked in and I was approved for SSI disability. I worked for a state organization prior to that and was 2 coins short of full disability. I barely have enough to get by right now and if I were to lose these benefits I would end up homeless or have to go live with a previously abusive parent.

Frankly I'm terrified. Is a full review normal? Should I be worried that I might lose benefits? Does anyone have any advice?

On top of all this, I've suddenly received letters from the IRS claiming didn't file on some imaginary income that I have no idea what they are talking about. It looks like they are referring to a student loan I used to pay bills but why would the IRS be involved in that when I'm already getting 4 calls a day from the loan people.

I'm at the end of my sanity, the stress is overwhelming. I have no idea how to address the IRS, the loan people. I've been trying to figure out how all this happened and when and what they are talking about. I generally have cognitive functioning problems. I'm not the crazy workaholic multitasker I was 6 years ago. I feel like I'm dropping the ball everywhere and making the situation worse.

I'm in a constant state of panic now and all my attempts to find help in understanding what's happening and how I can make things right are turning up dead ends.

Any info or advice would be so greatly appreciated. Are there any MS resources for help managing finances? I feel like I've spent my 30s trying to juggle bills I can't pay and in at the hospital/doctors office. That's my job, I get that, but I can't continue in this constant state of fear that I will lose everything I have left, go to jail, or something crazy like that.

Thanks in advance,
Nicole

[Jules A]

Hi Nicole,
I'm sorry you are struggling. I don't know anything about disability reviews but have heard that there are many scams under the guise of IRS calls, is it possible this is one of them? The other thing I thought, and I'm sure others will write in if I'm mistaken, is that if you were on disability your student loans can be discharged?

Hang in there and please keep us posted.

[KoKo]

I posted this in the SSID forum but there's so much going on that I wanted to post more generally. I'm usually bad at asking for help but I've known I'm in over my head for a while now and the hits just keep coming. I've been falling, had the worst MS hug I've ever had (was suffocating for days). The new symptoms keep coming (though I haven't had optic neuritis since starting rituximab) but no new active lesions to explain it.

So its infusion month and I received a packet in the mail informing me that I have to complete a full review of my disability. I was approved 6 years ago and wasn't expecting to have to do a full review like this, not to mention being able to do all the packet required. I called for an extension so I have till the 17th of June to complete it.

Anyway, I don't work. I am alone, no real support from family, just a couple good friends that help me out. When I was first diagnosed I had been living abroad was visiting for my best friends wedding and lost my eyesight. I paid for my bills out of pocket because I thought it was the right thing to do.. well.. I put myself in massive debt and went completely broke before insurance kicked in and I was approved for SSI disability. I worked for a state organization prior to that and was 2 coins short of full disability. I barely have enough to get by right now and if I were to lose these benefits I would end up homeless or have to go live with a previously abusive parent.

Frankly I'm terrified. Is a full review normal? Should I be worried that I might lose benefits? Does anyone have any advice?

On top of all this, I've suddenly received letters from the IRS claiming didn't file on some imaginary income that I have no idea what they are talking about. It looks like they are referring to a student loan I used to pay bills but why would the IRS be involved in that when I'm already getting 4 calls a day from the loan people.

I'm at the end of my sanity, the stress is overwhelming. I have no idea how to address the IRS, the loan people. I've been trying to figure out how all this happened and when and what they are talking about. I generally have cognitive functioning problems. I'm not the crazy workaholic multitasker I was 6 years ago. I feel like I'm dropping the ball everywhere and making the situation worse.

I'm in a constant state of panic now and all my attempts to find help in understanding what's happening and how I can make things right are turning up dead ends.

Any info or advice would be so greatly appreciated. Are there any MS resources for help managing finances? I feel like I've spent my 30s trying to juggle bills I can't pay and in at the hospital/doctors office. That's my job, I get that, but I can't continue in this constant state of fear that I will lose everything I have left, go to jail, or something crazy like that.

Thanks in advance,
Nicole

Hi Nicole

Sorry that you are going through a very stressful time.

I haven't ever had to complete an SSDI full review (with a packet?). I have only ever received a one page form with a few questions to answer and send back.

What all does the packet require from you? I wouldn't worry about losing benefits, as long as you turn in the required paperwork on time.

I don't know anything about student loan IRS issues. Maybe you could call them Tuesday to find out what that is about?

Hopefully someone here with some knowledge on these issues can steer you in the right direction.

Take Care

[jlk9498]

Maybe there is an MS advocate program on one of the MS websites? Like a local chapter or something can help you.....??? Sorry to be vague.....hope you find help

[jreagan70]

Hi Nicole:

This almost never works when someone is overcome with anxiety, but it needs to be said anyway:
Take a deep breath, let it out slowly, and calm down for a minute.

Periodic full disability reviews are absolutely normal, and no, you won't go to jail. Debtor's prisons were outlawed int he United States 200 years ago.

You said you have a couple of good friends who are helping you out. It sounds like it's time for you to choose the one with the best head for details and enlist their help in going through all of disability and financial issues.

If you're still disabled, there shouldn't be a problem with continuing to remain classified as disabled as long as you provide the information that proves it. Filling out the review forms is where your friend with the head for details will come in handy. If you supply the information that supports your continuing disability -- which may very well involve statements from your doctors and some medical records, so get started working on that now if you have a deadline by June 17 -- that should be the end of it until your next review in a few years.

However, if you're receiving SSI instead of SSDI -- which is income and needs based -- your benefits can be affected by your income and your financial need. If you meet the financial needs criteria, you should be able to continue with your benefits. If you don't meet the financial needs criteria, your benefits will be affected. Your detail-oriented friend can help you determine this. Also, there may be a social worker available through your county health department or the hospital you're getting your medical care from who can help you get this figured out. So it will be helpful if you check into that.

As far as the IRS goes, ask your friend to look over the letters and determine if they really are from the IRS. If they are, ask your friend to find out exactly what they want so you can respond. This is important: NEVER IGNORE THE IRS.

As far as loans go: Permanent disability is usually grounds for having student loans dismissed. Have you applied for a disability dismissal? The agency that holds your student loans has no way to know you're disabled if you don't tell them. So next on the list is to has your detail-oriented friend to look into the possibility of a dismissal of your student loans based on disability.

As far as medical bills go: If you're on SSI, you should also be on Medicaid, so you shouldn't be paying much, if anything for medical bills now. SSDI is different. Hospitals and medical groups often have sliding payment scales available through their community sevices/charitable offices. Have yo informed your medical providers that you're on disability and need financial assistance?

As for older bills, the same issue applies. Have you told the doctors and hospitals that you're on disability and are unable to pay? If you can't pay, you can't pay. That should be the end of it. So next, ask your detail-oriented friend to go over your medical bills and find out how to notify everyone you owe money to that you're on disability and unable to pay. After that, you might need to get help from whichever group in your area is offering free legal services to find out how to get the collection agencies to leave you alone.

Your local chapter of the National Multiple Sclerosis Society might be able to steer you toward people or agencies that can help with your financial management. Your local Area Agency on Aging also helps people with disabilities and might be able to give you information. Your local Legal Aid Society might be able to help.

It's a good thing you're speaking up now to get help. Everyone you owe money to has to be informed of your situation if they're going to start leaving you alone. It might be that the process is easier than you're dreading, but you have to speak up and get everyone informed first.

I appreciate that you're trying to make everything right, but some things just can't be made right, at least not in the way you're used to. You can only do your best, and I hope you can get your friends and maybe some of your local charitable agencies to help you.

The worst thing that's happening right now is the anxiety that your imagination is causing. So again, take a deep breath and calm down. Ask your friends to help you, and if you need to, ask your doctors for medication and counseling to manage your anxiety. When your head is a little clearer and lighter, it will be easier to see what your possibilities are.

[Panegyric]

Hi Nicole:

This almost never works when someone is overcome with anxiety, but it needs to be said anyway:
Take a deep breath, let it out slowly, and calm down for a minute.

Periodic full disability reviews are absolutely normal, and no, you won't go to jail. Debtor's prisons were outlawed int he United States 200 years ago.

You said you have a couple of good friends who are helping you out. It sounds like it's time for you to choose the one with the best head for details and enlist their help in going through all of disability and financial issues....

Thank you so much for responding, Thank you everyone.

My capabilities have declined since diagnosis, so I'm just as disabled if not more so than before. It was hard for me to accept but I've come to terms with it. I suppose my concern came from people questioning why I had received a full review questionnaire. I didn't know if it was normal or not. hearing the 'you don't look sick' over the years has taken its toll and since I'm without any support I'm scared because that's all I have. The power that this whole review has over me just weighs heavy, if that makes sense. Thank you so much for the info. knowing its normal is a big relief. I have nothing to hide I just didn't know if this meant something.

The insurance is part of the benefits mentioned above and has helped with the medical bills. The previous bills, and my decision to pay out of pocket then, seems to be the lingering issue thats haunting me. I thought it was the right thing to do. no one told me not to give them everything I had.

As for the student loans, I've been working with them to get the permanent disability status. I had one federal loan that I had paid off half of and one private loan that was more recent and that I have been trying to get paperwork complete. I've sent them info 3 times even certified mail the last time and I haven't heard back asking for more info but still get calls multiple times a day (which is not the best when you're dealing with anxiety issues). Then this IRS stuff that I have no idea where they are getting these numbers. I'm not the most disorganized person ever... I try to keep on top of things like this. I'm just baffled. all on top of regular financial worries, the falls that keep happening, I've been in a state of panic for a month. I might need to talk to the doc about the extremes my mood has been taking on lately too.

Back and forth but I'm going to try and take those deep breaths and get some sleep tonight. I'm so grateful to all of you for taking the time to read and respond. It means a lot. Also means a lot that this message board exists. It's a life saver.

[Mamabug]

It sounds like this is really overwhleming and anxiety-producing for you. You need someone to share the load. I suggest that you enlist someone, as jreagan suggested, with a good "head" to assist you.

List your issues, just briefly, on a piece of paper, so that you'll remember to deal with all of them. Prioritize them, in order of which need to be taken care of first.
1. SSDI Review - by June 17
2. IRS letter - ((response date?))
3. Student loans -
4. Medical bills -

You can start with a friend. In addition, I'd suggest that you call your local chapter of NMSS (National Multiple Sclerosis Society) to see what they can do for you. If you don't know how to contact a local chapter, just call their national number. 1-800-344-4867

Perhaps you even want your friend to be with you when you make the call to NMSS. And put the speaker phone on. That way, you'll have a second ear and second brain to assist you in processing the information they give you and the resources that they suggest as being available to you. They'll be able to better help you in formulating and following through with a plan.

[jeannef1]

Thank you so much for responding, Thank you everyone.

My capabilities have declined since diagnosis, so I'm just as disabled if not more so than before. It was hard for me to accept but I've come to terms with it. I suppose my concern came from people questioning why I had received a full review questionnaire. I didn't know if it was normal or not. hearing the 'you don't look sick' over the years has taken its toll and since I'm without any support I'm scared because that's all I have. The power that this whole review has over me just weighs heavy, if that makes sense. Thank you so much for the info. knowing its normal is a big relief. I have nothing to hide I just didn't know if this meant something.

The insurance is part of the benefits mentioned above and has helped with the medical bills. The previous bills, and my decision to pay out of pocket then, seems to be the lingering issue thats haunting me. I thought it was the right thing to do. no one told me not to give them everything I had.

As for the student loans, I've been working with them to get the permanent disability status. I had one federal loan that I had paid off half of and one private loan that was more recent and that I have been trying to get paperwork complete. I've sent them info 3 times even certified mail the last time and I haven't heard back asking for more info but still get calls multiple times a day (which is not the best when you're dealing with anxiety issues). Then this IRS stuff that I have no idea where they are getting these numbers. I'm not the most disorganized person ever... I try to keep on top of things like this. I'm just baffled. all on top of regular financial worries, the falls that keep happening, I've been in a state of panic for a month. I might need to talk to the doc about the extremes my mood has been taking on lately too.

Back and forth but I'm going to try and take those deep breaths and get some sleep tonight. I'm so grateful to all of you for taking the time to read and respond. It means a lot. Also means a lot that this message board exists. It's a life saver.

5 years after receiving SSDI I received a review questionnaire. Again 5 years after that. I no longer receive them...I know how you feel, I was a nervous wreck also!

[palmtree]

I think I have some comfort to offer you.

I have been on SSDI since 1988. Dealing with the Social Security Administration has been one of the most stress inducing things I've had to do in my life.

They have reviewed my case twice. I don't know if they do it on purpose or if they are just inefficient but they do everything possible to provoke terror. This has been so many years ago so I can't give you all the details.

As I recall the first time I got a letter in the mail telling me "it is time to review your case. Please provide all names of doctors you have seen and, if you still believe you are disabled, explain why you believe you are disabled.

Six months later, I got a letter saying, "we have reviewed your medical records and have determined that YOU ARE NO LONGER DISABLED. YOUR BENEFITS ARE GOING TO STOP IN 3 months. If you think we are wrong, you may appeal...

The second time was even worse. They stopped my checks for 6 months. I couldn't pay my rent (thankfully my landlord had a heart of gold) they required me to go to one of their doctors. I finally called the lawyer who helped me get approved and he said, "GO TO THE SOCIAL SECURITY OFFICE AND DEMAND AN EMERGENCY CHECK!" "Tell them you refuse to go to their doctors. You have your own doctors"


There was was more **** before I started gaining traction. The key is to calmly tell them exactly how your disability keeps you from working. If you are too tired to sit at a desk. If you have pain that interferes with your concentration. If you have memory difficulties. If you can't use your hands.

It's important to not be dramatic as if you are exaggerating your disability but don't minimalize it either. Breathe, pray, be humble.

It's going to be ok. They want to make it difficult so anyone who really can work wouldn't bother to jump through all these hoops. You are not going to lose your SSDI. But I will wish you luck anyway.

I hope that lessens your load.

[palmtree]

I just had another thought. If you are having trouble with all these agencies, you can write your US senator. They can help. It's part of their job.

[poppydarling]

I'm usually bad at asking for help but I've known I'm in over my head for a while now and the hits just keep coming.

Anyway, I don't work. I am alone, no real support from family, just a couple good friends that help me out.... I have no idea how to address the IRS, the loan people. I've been trying to figure out how all this happened and when and what they are talking about. I generally have cognitive functioning problems. I'm not the crazy workaholic multitasker I was 6 years ago. I feel like I'm dropping the ball everywhere and making the situation worse.

I'm in a constant state of panic now and all my attempts to find help in understanding what's happening and how I can make things right are turning up dead ends.

Hi Nicole: I have been where you are and I understand how stressful it is. Sending hugs! You are not alone.

A huge stress reliever for me was finding free financial counseling through my local United Way. Google "united way" and the name of your city or town to see if they have the 211 service in your area. If they do, you just dial 211 and someone trained to help with all sorts of free social services will help you pull together some contact names and numbers, including financial counseling, medical advocacy and pro bono legal help.

I have learned through my financial counselor that you do not have to panic on medical bills – depending on the state where you live, you could have as much as six months to respond to those bills. She even made a phone call to a collection agency for me.

I would call the IRS directly and ask them to look into whatever letter you have gotten, and tell them you have some disabilities and that you need to speak with someone who can explain it clearly to you. I have recently set up a payment arrangement with them that was quite easy to do. No judgment, no shame!

Just remember that the government designs their communications to spur immediate action! Their language is very aggressive. When I'm feeling overwhelmed, I sometimes ask a friend to call for me and get details that they can relate to me. That buys you a little bit of breathing space, and you won't have to worry about being emotional or shamed on the phone.

I hope some of these ideas help – keep us posted, okay?