Bring on the LTD fight

May 30, 2012

I don’t get truly angry very often, but today was one of those days.  I’m not talking about getting a bit mad.  This isn’t about being pissed off or annoyed.  I’m talking about blood boiling, can’t stop shouting, punching things kind of angry.  But without the punching, since my joints can’t take it.  But if I could, I’d have punched some pillows, or maybe worse.

To be honest, I never expected it to be easy to get my long term disability (LTD) claim approved.  I assumed they would make it difficult.  I didn’t expect to encounter pure ineptitude, though.  It is infuriating!

I won’t go into the details.  They aren’t that interesting to an outsider and I’d just get mad if I typed them all out again.  Basically, the LTD insurance company uses a separate company to get my medical records.  I was told they use this company because they can follow up with the doctors’ offices more frequently than the LTD insurance agency can.  Too bad this isn’t true.  As it turns out, this company hasn’t been following up.  I spoke today to a doctor’s office who contacted this company on APRIL 30!, then was never called back.  When the company did receive records from another doctor, they misplaced them and only realized it when they turned up 3 weeks later!  Until the records appeared, these people were saying that they hadn’t received the records at all.  Like I said: inept.

In all, this company’s ineptitude has set my claim back at least 5 weeks.  That’s based on the setbacks that I know of.  My guess is that there are others that I haven’t discovered yet.  But I will.

I don’t plan on taking this lying down.  First, I contacted the LTD insurance company and made it clear that from now on, I will handle anything that horrible company would have done.  They are to have nothing at all to do with my claim from now on.

Second, as soon as my claim is approved (no point in ruffling feathers before that) I am going to call the CEO of that inept company, I am going to file complaints with the LTD insurance company, and I am going to report that company to every regulatory agency that I can think of.  How dare they make worse a time that is already so difficult for people?  And don’t get me started on the idea of such inept people handling so much confidential information!

It took a lot of heavy pacing, a lot of nasty words, a lot of venting to a friend, and a lot of effort, but I have finally managed to reduce my anger to mere… well, at least to a lower level of anger.  I am certainly not doing this for those idiots, though; I’m doing it for me.  I need to relax and take care of my body.  And then when the time comes, I will definitely hold them accountable.


I wish I could stop my fake smile

July 21, 2018

Even at 12 years old, I knew not to milk my situation. If I exaggerated the pain I was in, cried unnecessarily, or complained too much, it would come back to bite me in the butt later. I was right, of course. Even without all of the theatrics, some doctors and teachers suggested my pain wasn’t real, that I was just trying to get attention. Assholes. The thing is, this idea that I shouldn’t exaggerate anything boomeranged, and soon I was pretending I was ok even when I wasn’t.

Sometimes that’s a good thing. For me, faking it until I make it can help. And I hate having people constantly ask me what’s wrong, so looking like nothing is wrong can help to prevent that.

But then, sometimes it’s not so good.

Today a friend stopped by unexpectedly. I was NOT in a good place. I’ll probably right about that another time, but basically, I’m in rough shape. The pain has been worse lately, and it’s spreading to more parts of my body for some unknown reason. I’m worried about the future. I might have to move out of the apartment that I love. I’m frustrated and overwhelmed and, mostly, very scared.

I started to talk about some of this with my friend. I could feel the start of tears in my eyes. But I didn’t want to get too far down the rabbit hole. If I tried to explain everything, it would just lead me to focus more on the thing I’m trying to get off my mind for a while. So I said I needed to stop talking about it. And a second later we had changed the subject and I found myself smiling.

Now don’t get me wrong, smiling is a good thing, especially when you’re happy. But I wasn’t happy. I was smiling because I am used to plastering that smile on my face, even when I don’t want to. It’s what made the LTD and SSDI trials so hard: I was supposed to let them see how I really felt, and I didn’t know how to do that anymore. After so many years of fake smiles, how could I stop?

Before my friend showed up, I was definitely not smiling. I wasn’t smiling after he left, either. But with him here, I smiled. I thought to myself, “I should stop smiling. He knows I’m scared and in pain and he’ll be here for me. I want to stop.” But I couldn’t.

When my grandmother died just a few years ago, I cried during the funeral. Later, at the shiva (a Jewish tradition where friends and family gather to console the bereaved) I found myself smiling a lot. One relative I didn’t know very well even commented on how great it was that I could focus on the good parts of my grandmother’s life and remain so cheerful. Little did he know. I wasn’t cheerful. It was an act. I was smiling, I had a bounce in my voice, and I was miserable.

My fake smile was helpful today at the grocery store. I looked and acted normal, so no one asked any questions. But with my family and friends, sometimes I want to stop smiling.

If only I knew how.


I lost thousands of dollars of financial assistance because I didn’t understand the system

August 30, 2014

I grew up in a middle class family and lived a middle class lifestyle after I left my parents’ home. I earned a decent enough living. There was a lot I couldn’t afford, but I never worried about paying rent or buying food.

Then I got sicker.

It’s been a roller coaster since I left my job almost 3 years ago. I had short term disability benefits, then nothing, then long term disability benefits, then nothing, then social security disability benefits. During the long periods of “nothing” I knew there was the possibility of getting long term disability benefits and/or social security disability benefits (SSDI.) I didn’t know what I’d end up with, so I didn’t know how to plan. And besides, I kept hoping that I’d return to work soon.

Now I have SSDI and no thoughts of returning to full time work very soon. I hope to do some part time work to supplement SSDI, but even that has to wait until I feel a bit healthier. And I just can’t live on my current benefit and keep my current lifestyle. After paying for food, transportation, utilities, and, especially, medical expenses, I have about $100 per month left for rent. Obviously, that won’t work. Even if I got roommates. So what are my options?

  • I could move in with my parents. They’d take me in. I’d have to move an hour away from all of my friends and doctors and be a 30-something living with my parents, but it’s an option.
  • I could buy a condo. I still have savings from back when I worked. Unfortunately, I’m spending them on rent now. Instead, I could buy a condo. But then I’d have HOA fees ($200-300/month) and upkeep, and I don’t have the budget for that.
  • I could buy a house. But then I’d have a mortgage and upkeep. No good.
  • I could buy a 3-family house. I could live in one apartment and rent out the other two and use the rental income to pay the mortgage and upkeep costs. This has some appeal. I’ve looked into it. But 3-family homes are really expensive around here, and even if I felt comfortable taking on such a big mortgage, I wouldn’t qualify for it. And I’m not ready to move out of the Boston area.
  • I could push myself to go back to work before I’m ready. But obviously that has disaster written all over it.
  • I could just keep on spending my savings and hope I’m well enough to return to work before they run out.

I’ve been sort of stressing about this. I feel like there should be another option. And then talking to a fellow disabled friend yesterday, I found it: financial assistance! When I left my job two years ago I looked into my options for help, but I was stuck trying to interpret things online myself. I didn’t know who to ask for help. I checked around with friends, but it wasn’t helpful. And since I didn’t know what my financial position would be going forward, I gave up. Bad move.

On Tuesday, as soon as the long weekend is over, I’m going to visit my local house authority and sign up for section 8 housing. The waiting list is long, and I’m pissed as hell that I didn’t sign up 2 years ago. I could have already been on the waiting list for 2 years! Since the wait is longer than that, I should have done it. But I didn’t realize. I thought that if I got long term disability benefits, I’d get kicked off the list. And I didn’t want to have to live in section 8 housing. As it turns out, those LTD benefits would have still had be below the income limit. Who knew? And many section 8 vouchers allow you to live in any housing, as long as it meets certain requirements (generally that it’s around the median rental rate for your area, and not some huge luxury unit, and that it’s well maintained and habitable.)

And then my friend told me more: I qualify for fuel assistance! Having heat isn’t optional in Boston. Without it, pipes freeze and burst. Even more, you can freeze to death. You must have heat. And apparently I can get help paying for it, even though it’s included in the cost of my rent! She also said she gets help paying her electric bill – that had never occurred to me! Best of all, she told me where to go to find out more about these resources.

Since it was a Friday evening, I couldn’t call any of the offices, so I went online. Now that I knew where to look and what to look for, there was so much information! She got the information from her local housing authority, so I found their web site, then the site for my town’s housing authority, and I just followed the links from there. I still need to talk to someone to get questions answered, but boy do I feel better. If only I’d done all of this two years ago, though! I’m kicking myself that I didn’t.

I’m including below some of the useful links I’ve found so far. Clicking these links will open up new windows. As I find more, I’ll add them later. These are for Massachusetts. If you’re in the U.S., maybe these will help you find similar resources in your own state.

I’ve already missed out on thousands of dollars of financial assistance by not signing up for all of this two years earlier. What about you? If there’s financial assistance you could be getting, don’t make my mistake! Sign up now! And please help me make further mistakes by telling me what else I should be doing!

What other financial assistance should I be looking for? I welcome any and all advice!!

~~~~~~~~~~~~~~~~

Section 8 centralized waiting list: https://secure.massnahro.org/Section8LHA_Internet/WebPages/Registration/Home.aspx

Types of rental assistance: http://www.mass.gov/hed/housing/rental-assistance/

Fuel assistance agencies: http://www.mass.gov/eohhs/docs/dta/c-dta-fuelassist.pdf

Fuel assistance overview: http://www.massresources.org/liheap.html

Section 8 explanation: http://www.masslegalhelp.org/housing/types-vouchers

SNAP food assistance: http://www.mass.gov/eohhs/gov/departments/dta/food-assistance.html


A social security and long term disability update to make your hair stand on end

July 8, 2014

From the first day I decided to leave my job almost 3 years ago, my top priority was to get my health back on track. Unfortunately, various forms of insurance have worked to, intentionally or not, make that as difficult as possible.

My health is my priority, but money is still necessary. I need it to pay for any healthcare that insurance (when I have it) 20120809_220808doesn’t cover, and also to pay for little “luxuries” like rent, electricity, and food. When I left my job I had short term disability insurance. I filled out one short form and had benefits. It was nothing short of miraculous! Unfortunately, the miracles ended there.

If you’ve been following this blog for a while, you know the basics: I was denied long term disability insurance (LTD,) went through a long, frustrating, stressful, difficult, expensive appeal with a lawyer, and was finally approved. What you don’t know is that when they did their let’s-see-if-she’s-still-disabled review of my medical records, they denied me again. They said I was well enough to work. Of course.

Thanks to the LTD fiasco, I had my employer-provided health insurance, then nothing, then the private insurance again (they were trying to mollify me after a big error on their part), then nothing, then MassHealth (our state medicaid), then private insurance, then nothing, and now MassHealth again. And yes, that’s all been in the last 2.5 years. And I think I left out a transition. It’s been hard to keep track, but I have a record of it someplace….

If you’ve been following this blog for a while, you know that I applied for social security disability insurance (SSDI), was denied, appealed, was denied again, appealed again, and got a hearing before a judge. What you don’t know is that…. I WON!!!! Yippee!!!!!!!!!!!!!

I was certain I’d win that last round of LTD, and then I lost. I was certain I’d lose the last round of SSDI, and I won. So what have we learned from this? We’ve learned that my instinct for insurance appeal outcomes sucks. We’ve also learned that the system is horrible.

I told a bunch of friends about this, and I mentioned that I’ll have Medicare (the federally-run program) for health insurance now, in addition to MassHealth. A couple of friends who’ve been through this rushed to remind me that there’s a waiting period for Medicare. Yes, if you’re so sick that you need SSDI, they make you wait another year and a half before you get health insurance. Brilliant system, eh? But the ridiculous part is that I’m long past the waiting period! My benefits are retroactive, and I was eligible for Medicare 4 months ago!

Of course, nothing is ever easy with any of this bullshit. So even though I got the judge’s decision several weeks ago, I still don’t have benefits. I was going to wait to write this post until after I knew more, but I found out yesterday that my social security office has 60 days from the date of the judge’s ruling to process my file. It seems silly to wait another month and a half to write this, so here I am, typing about the benefits I’ve been told I’m owed, but which I don’t have. I don’t have the back payments the government owes me. My lawyer does not have her fee. I do not have Medicare. I can not use the ruling to get onto the disability-related portion of MassHealth or to get any of the other random benefits I would get with it, like a reduced-fare subway pass. Worst of all, I can not see new doctors (and I need several) under a stable, established health insurance. This probably won’t be an issue, but after everything I’ve been through, it makes me nervous.

Too much stress is bad for even the healthiest person. It’s much worse if you have an autoimmune disease, and I have several. It’s even worse if you have adrenal insufficiency, which I have. So the stress has literally been holding back my recovery. Last year, one of my medical practitioners told me that she didn’t expect me to make much more progress until the LTD and SSDI issues were resolved, because my high stress levels would impede any treatment. She agreed I was handling the situation as well as could be expected, but anyone going through it would have a lot of stress, and therefore a lot of stress hormones.

Then consider the number of hours I have put into this. I tried to keep track at one point, but it was too depressing to see. I was constantly submitting requests for medical records, following up, and reviewing the records. I had to stay on top of doctors who didn’t fill out forms completely or on time. I ferried paperwork to and from my lawyer. There was so much crap to deal with. Some weeks I didn’t do any, but others it was like a part-time job. But unlike a job, the “payment” would be either nothing, or maybe the money that I rightly deserved.

And don’t forget the financial cost. Yes, I spent money on a lawyer. I also had the uncertainty of income. A friend with chronic illnesses sees a therapist who isn’t covered by insurance. I can’t do that. She gets regular massages. My doctor and physical therapist want me to do that, but I can’t afford it. Maybe I couldn’t have done all of that anyway, but I could have made long-term decisions if I’d known I’d get the benefits I qualified for. I have worried about money more in the last 2 years than I ever have before in my life.

And now? Now it isn’t perfect. Now I’m still waiting for everything. Now I know that my monthly SSDI payments aren’t nearly enough. If I can’t return to work at least part time within 2 years (when the SSDI pack payments and my savings run out), then I will have to move in with my parents.

But now I also have less stress. I have more time. I can finally do what I’ve wanted to do for the last 2.75 years: I can make my health my #1 priority.

Please use the comments to tell your own SSDI stories. Vent your frustrations. Share your experiences. For those of us who’ve been through this, we might as well lend an ear to one another. Or write any other comments you’d like.


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