Migraine

I was released from the hospital (Jefferson headache center's in-patient program) just last week and my migraines are back and still almost every day. I was thinking about applying for social security disability before and cancelled when I got into the Jefferson program. I was really hoping that would "fix" me.

Now I'm looking at our financial picture since my husband is works on commission and not too many people are buying things right now. I realize I couldn't go back to work now if I wanted. I'm having a hard time even caring for my kids.

I am not a slacker. I have done well at every job I had and never let the migraines upset my performance until the last job when they started every day. I had to quit.

I just don't know how to ask my docs if they would consider me disabled and be willing to go through the paperwork, without sounding like a slacker? I feel like they would think I was lying or something, because I am getting by although I am medicated most days.

Any advice on how to start the conversation?

Teddi from PA

Teddi,

Who's your doctor at the Jefferson? I don't know all of them, but with those I do know, I think you could explain things to them just as you did to us.

Teddi -
I think the doctors at Jefferson, likely most leading migraine specialists, are very aware of how disabling this disease is. They write about it, some of them are big advocates for this disease.

I don't know you, so please forgive me, but if I can go out on a limb and give you my opinion, you sound a lot like I feel. You're used to being a busy, competent, productive person, and you're having a hard time accepting the reality of where you are with this disease right now. Maybe there's someone out there might call you a slacker, but for me I know I'm the one who calls myself the most names, not anyone else.

Many members of our forum family have struggled with going on disability, accepting that they needed to do that. I think it's important that we let ourselves grieve for what is lost to us right now. That's not to say that it's lost forever - but it's lost right now, and we have strong feelings about that.

I know I'm not exactly answering your question, but I think if you can give your feelings some room, and accept that you are where you are right now, it won't be so hard to talk to the doctors.

Good luck to you, and let us know how it goes!

- Megs

Teddi,

I agree that the hardest hurdle might be for you to give yourself permission to really believe that you cannot work, that you have a serious (invisible) illness, and that you have the right to be assisted. Once you move just a little bit more in that direction, I think you'll be able to just matter-of-factly ask your doctor the question.

It's so hard to let go of the idea (even temporarily) of being someone who can handle every life task, and accept that at least for right now, your illness is truly preventing you from earning money. As you point out, if you can barely care for your kids, how can you possibly work right now?

I know that this decision was a really hard one for me nine years ago, and that it still has the ability to bring me to tears every once in awhile when I think about how much I truly loved my professional work. I always have to remind myself that we all have to play the hand we're dealt, and I got dealt the really migraine hand.

I don't know if this helps - I hope it does. I have the greatest compassion for your situation, and I truly think the doctor part of it will be easier than you think.

It could help you to make a list of all the things you used to be able to do, and now cannot, and specifically list how your symptoms prevent you. You'll have to do something like that anyway for your SSI application, so it might help you get ready both for talking to your doctor and to the SSI folks. Plus it will help you be more realistic about seeing your current plight.

Just a personal experience - SSI application experiences all depend on the person helping you with the paperwork, but I have to say that the woman who helped me with my initial application was nothing but sympathetic, was very thorough in helping me think of anything I could use to support my application, and generally made the experience far more pleasant than I thought it would be. You may be pleasantly surprised - I certainly was.

I've posted longer than I meant to - hope this isn't too rambly for you - but I am really hoping that you can jump to it and get the process going. You're facing a hard decision, but it's a necessary one. Your family survival comes first, after all.

Good luck. I send you all my best wishes.

Lynne

Teddi,

It took a lot of inner debate for me to finally apply for disability. I was at a point where I spent more time home in pain then I did at work. DH and I decided it was time for me to make my full time job taking care of myself and finding the right specialist to help. Unfortunately, that meant no second income so, I applied for SSDI online and was approved about five months later. Then I had to wait another three months before I started receiving temporary benefits.

I had a letter from my employer at the time who stated I tried to come in as much as possible, I used all of my sick leave, vacation and personal time in a span of two months and he was sorry to see me leave. I also submitted a ton of medical records with my paper application.

It was a difficult decision to leave a fulfilling job but it allowed me to focus on my health and getting my migraines back under control. I wish you luck!!

Very interesting topic!

I would think if you feel you cannot work, that I'm sure it wouldn't be hard to ask...

I just started reading Dr. Young and Dr. Silbersteins book "Migraines and Other Headaches" And in one of the sections they say that Migraines are about as dibilitating as congestive heart failure and almost as dibilitating as AIDS - They also mentioned cancer in there somewehre but I don't want to misquote them.

It's a great book so far. I find it wonderful to read from a doctors point of view that they agree just how dibilitating this disease really is!

Just thought I would bring that up since you are going to Jefferson and all......

good luck with the SSI!

quote:

I know I'm the one who calls myself the most names, not anyone else.

Same here. I judge myself so harshly and in ways I would never judge anyone else. It's hard to be objective about our own limitations.

I was recently approved for social security disability. I didn't apply for it until I had two bad experiences with having to leave jobs because of my migraines. Looking back I wish I'd just applied when I had to leave my job as an attorney, but I couldn't accept that it was an option.

So I would encourage you to view it as a reasonable option for you and pursue it. The worst thing that can happen is that they reject you and you have to appeal. What do you have to lose, ya know?

It is really important to do certain things when you are applying to position yourself so that you have the best chance of being approved. On the But You Don't Look Sick message boards one of the moderators has a guide to applying for SS that is extremely helpful. She will e-mail it to you if you go over there and ask her.

Social Security Benefits

Start making lots of notes about all the things you can no longer do as a result of your migraines. And keep a calendar of when you have migraines. I did this and I have to think it was helpful in showing them just how often I experience them.

Unfortunatly having been through it with my wife. The first step seem's to be with A lawyer who specialize's in the subject. Then they contact you'r doctor and get needed letter's. Hard deal but if you stick to your gun's it can be acclomplished. it took us A year but we got it done. Your not lazy, Your not A slacker. You just hurt And that's hard for people to understand. Don't give up.

I meant to mention this when I posted earlier today, but there is a helpful book appropriate for non-lawyers I would recommend you get, too.

How to Get SSI & Social Security Disability: An Insider's Step by Step Guide by Mike Davis

I am on SSDI because of my migraines. What I did when I initially applied, was notified all my treating physicians that I had applied for SSDI & I would appreciate if you would cooperate in supplying any medical info they asked for.
Then I requested copies of my medical records & notes from all of my treating physicians for my own records/benefit.

Only one physician failed to cooperate with SS. So I fired her.

Most states are heavily backlogged in processing SSDI cases. In my state, it took me 3 1/2 years from initial application to getting a favorable decision. Therefore, if you are going to file, strongly suggest that you do so AASP. But, you must not be employed when you do.

Good luck!

Thank you everyone for all your input. I have gotten the forms and started working on gathering lots of info. Luckily I've only been seeing one local neurologist for the last 10 years, and when he gets stumped he sends me to Jefferson Heache Center. So only 2 places. Yeah!

Thanks.

Teddi from PA

quote:

Originally posted by Teddi:

I am not a slacker. I have done well at every job I had and never let the migraines upset my performance until the last job when they started every day. I had to quit.

I just don't know how to ask my docs if they would consider me disabled and be willing to go through the paperwork, without sounding like a slacker? I feel like they would think I was lying or something, because I am getting by although I am medicated most days.

Any advice on how to start the conversation?

Teddi from PA

Teddi,
I understand that deciding to apply for SSDI is a big hurdle. It is really hard to realize that your migraines are to to point that you can no longer continue working. Just as with any other loss, give yourself time to grieve.

As for talking to your doctors, you can let them know that you are applying for SSDI and to ask for their support. But your doctors don't determine whether you are disabled. SSA makes that determination. I applied on-line (it takes a very long time to fill it out) about 2 months ago and I have not heard anything. I don't expect to hear until the end of June.

You have had many others answer your questions, but this is my take. Some (most) get denied the first time and I expect that to happen with me. Others I know have had it take years until they received benefits. I know I am painting a grim picture and I pray that won't be the case with either of us, but I hope for the best and plan for the worst.

Oh, as for being unemployed at the time of application: I am not sure that is necessary. I am self-employed and earn less than $6000/year and I think that is ok.

How can you present yourself as being disabled and not a slacker? Tell the truth. Tell your story. This is how it was and this is how it is now. Be specific: I stay in bed for 4 hours/day, 3-4 times a week is more specific than I stay in bed. As for your docs: they do this a lot and will not look down on you.

Well, good luck and we are all rooting for you. Take care of yourself and do what you need to do.

Teddi,

I hope this process moves along for you. I echo the advice you've been given - be really specific about what you can and can't do.

I actually found that my grieving process was helped along by having to be detailed and honest about what capabilities I'd lost because of my illness. It forced me out of my "Oh, I'm fine" mode and made me be a lot more realistic about how much things had changed. In the long run, I think it was helpful.

Another thing that helped was my friends' absolute incredulity when I told them I was afraid to apply for disability because I thought maybe I could handle work after all. My best friend stared at me and said, "How many times this month have I come over to your house in the middle of the night and watched your kids so that your husband could drive you to the ER, and then watched him practically carry you back to bed?" (She's a shrink, like me, so we're pretty blunt with each other). I said, "So, you don't think this is a bad idea?" and she said, "I think you'd be stupid not to." My sister had the same reaction, and it was a good reality check.

Anyway, my point was that almost all of us feel guilty about applying for disability, we miss our jobs, and we worry that we're "not sick enough". Just because we're not missing both legs, or something. It's normal. But you come first. Period.

I'll keep my fingers crossed, and I'm super glad that you only have to deal with two doctors' offices. That is great news.

Lynne