Migraine

Are there any other migraine sufferers on disability? I have been on SSD since 2003. It can be very embarrassing when someone comes up to you and asks, "what do you do for a living?" and you have to reply with. "I'm on disability".

And they ask, "for what?" and you reply "for Migraine Disease". Sometimes you get a... "really?" Most people do not understand the severity of this illness. Sometimes I get so depressed because I have worked a public job since I was 14 now I am 60. Had a part-time job but because of migraines I had to quit.

I put 3 of my children through college... and now I can't hardly do my every day activities like house cleaning, etc. I manage to get every thing done on a good day. I am actually a clean freak as my children use to say to me. But now I do as little as I feel like doing. I do live alone so I do have an advantage now.

I have so many triggers now... mostly weather changes. Weather changes in MD about every 10 minutes.

I go see a new Neurologist through Kaiser Permanente on April 9. I am ready with all of my information. Hopefully, I will be able to get some very needed help. I am having from 12 to 13 migraines per month if not more. I lose count. My prescription plan only gives me 9 Axert.... not enough for the amount of headaches I have. Have spoke with the insurance co. but that's all they can give me. Also on preventives Verapamil, and Imipramine. Not doing what it used to do.

Having a problem with depression as well... does anyone else?

Remember me on April 9th that I will get some relief. All of you will be in my prayers as well.

dj-you could use some of these right now

This is my first month on SSDI and I admit, it took awhile for me to work up the courage to file the paperwork and accept the fact that I needed the help. However, that is what disability is-help. My disability is temporary and I'm hopeful to keep it that way. I’m 38 and look forward to working again.

It relieves the stress of worrying about how to contribute to our household income while I’m working on getting better. That has become my full time job, me and my health.

Now, I have a bit of breathing room. For awhile, I felt a bit worthless too but I had to push pride aside while I look for the right combination of preventatives to reduce my migraines. My focus right now is my family and my health.

You’ve done a lot of wonderful things, you shouldn’t feel worthless at all. You’re doing what’s best for you and in my opinion, I think that’s wonderful!!

I'll continue to keep you in my thoughts, especially April 9th!!

I'm not on disability, but you do what you have to to survive.


I think it's good the way you answer, "migraine disease." At least it may make some people stop and think migraines are more than bad headaches.

Take care.

Thank you Laura for the hugs. I needed them!

Deb, thank you for your response too. I am glad that it is finally classified as Migraine Disease and not just a headache as some people refer to them.

April 9, I am hoping for the best.

Funny you should post this today!

I got my letter from the Office of Personnel Management today saying that my disability retirement had been approved. Migraine and Meniere's are not the only things I've got going on. I'm to the point I can't bathe and do anything else on the same day though.

Now I just need to hear from Social Security. I felt worthless when I was at the office and had to listen to my co-workers. Here at the house, my Assistant Offspring make me feel worthy and loved.

Yeah, I mourn the loss of the things I can no longer do. I have the rest of my life for that, I'm afraid.

Don't worry djburgy--I think you're worth plenty.

Hi DJ,

I'm not on disability but some days.....

I've been getting more proactive in my treatment, lately, therefore I've been feeling so much more empowered. Sometimes I just want to shout from the roof tops, "I have migraine disease. If you don't, PLEASE keep your comments to yourself." You are right... most people DON'T understand the severity of this disease. And in all honesty, this really bothered me... UNTIL I found this site. Now I feel like I'm a part of something incredible - part of something that's way bigger than my migraine disease. That helps me tremendously.

Weather changes seem to be my most prominent trigger, and in Tennessee the weather changes every ten minutes too. What I've learned is that while I cannot control the weather, I CAN try to avoid other potential triggers. The less triggers I have going on at once, the less migraines I get. I was getting migraines 5 - 6 times a WEEK, and I know how worthless I felt. I already suffer from a form of depression called dysthymia, which I manage to "pretty much" keep under control under regular circumstances. But whenever I'm plagued with migraines, I get so down and feel like such a burden to those around me that I would often wish I could just live alone in the world. Alone to suffer by myself without having to depend on anyone. Problem is... I have people who love me and people who depend on me, so that wasn't an option. No, it's not realistic either, but you couldn't tell me that while I was in the midst of my pain. Now I know that I can come here and get support from others who know JUST what I'm going through. GOSH, there is so much power in that!

I think that seeing a neurologist is a great step in the right direction. And it sounds like you are ready for the visit, with your information. You need to have a good doctor on your side. I can tell you that my insurance company would only pay for 12 Imitrex per month, and that I was needing more than that. My neurologist submitted a form that requested 18, and while it took over a month to get it squared away, they finally complied. But they fought me all the way. They tried to tell me that the FDA people were the ones limiting my medication. This just wasn't true. Funny thing for me is.... now that I'm getting the 18, my migraines have calmed down considerably, due to other ways I'm taking care of myself, and so I don't even actually need them all . Dr. J, my neuro, was so excited to hear this at my last visit. However, she said, "I have one word for you. STOCKPILE." Anyway, Dr. J had to document (for the ins. company) how many migraines I was having, what medication I'd tried (and how the preventives, so far, weren't working). Maybe you can talk to your neuro about this same thing.

The next time someone asks you what you do for a living... maybe you can just say that you are a patient advocate. You don't have to tell them that YOU are the patient you are supporting. And besides... your involvment on this site is supportive of the rest of us here, right?

I'm glad you could come here and talk about what's bothering you, and I will certainly keep you in my prayers for the 9th.

Blessings,

Sandi

The work ethic is incredibly strong in our culture. That's not all bad, but it become destructive when people start to measure their worth (and the worth of others) by what they produce. What you produce is not the measure of your worth. Your worth is the same--infinite--whether you ever hold down a job for a day in your life or not.

But our culture makes it so easy to forget that.

Hi DJ,

to you!

Oh, I know how it is! I am 28 and haven't worked for the last 2 years because of this disease. I haven't applied for disability. But, I certainly understand how it feels when people ask me what I do for a living! In their minds, I am 'look fine'. Of course I get a lot of "but you are so young." It is very hard to meet new people. As Nut said, there is such a strong work ethic in society.

I miss working terribly. But, I realize I have to do what I have to do to take care of myself. It is frustrating that other people don't recognize this, but I've found, as Sandi said, I'm advocating for myself by educating others about my disease and how debilitating it can be.

I'll be keeping you in my prayers. My heart goes out to you.

Let us know how the appt goes, okay?

Kelly

Hi,

The first time my doctor told me I was medically disabled, I heard her, but didn't really listen. Battling feelings worthlessness can become all consuming. It has taken me a few years to realize that yes, in fact, I am disabled. I hate it, most of my family doesn't really "get it", or want to wrap their heads around the fact that I am just not the same person I was.

But, I'm building a bridge and walking over it. Trying very hard not to listen to the other voices and hear only mine. Accepting the person I've become. Not grieving the person I was. And that is now a disabled woman. With some awesome qualities I didn't have before....

DJ, if you haven't seen it before, we have some great articles about working with doctors HERE, including a guide to a successful doctor's appointment.

Having an invisible illness is difficult because we "look fine" to the outside world. There's nothing others can see that would make it look like we can't contribute to the working world like anyone else. But that absolutely doesn't mean you're worthless, and you know that.

What do you do for a living? You live. You're trying to make the best of your life by finding the best treatment, to get the best quality of life possible. You contribute to all of us here on this forum, and make the migraine community that much better by sharing your experience. As one of the younger community members (I'm 24) I feel much better having older, wiser, more experienced members here who know the ropes.

Hang in there. We're all here for you and we do understand. Let us know how your appointment goes, ok?

Hi there!
I'm sorry I didnt see this post before. but better late than never right?

I'm in the middle of this whole disability thing. In Canada, where I am, you go on "social assistance" first, if your lucky , like me you get a status of " temporarily disabled" then they send your neurologist's report *stating your disabled* and your self report to a review commitee
.

They can take up to 3 months, in which case, if they rule in your favour they'll retroactively pay you the extra amount for the months that it took.

But anyway, I can understand how you feel...

People say " and what do you work at?" " I'm on disability" and you can see them really trying not to look at you as if your scum, but it doesnt quite work. Theres always that look of haughtiness. Then they ask for what the disability is. " Migraine disease" " so you have headaches. rigggghhhtttt" I usually just walk away at that point for fear of letting my mouth get the better of me. Other times, I say " do you have migraines?" "no" " thats what I thought. Get just 1 in your life and you'll never ever call it a headache again!"

I havent been able to work since my migraines became insane back in september 06, except for a very brief period where I deluded myself into thinking i could try. It lasted about 2 weeks.

It took me a long time to admit to myself that I needed help. I am a very sick person. my husband cant even work for fear of leaving me alone, cause I also have seizures and dizzy spells, and falling spells. We've been relying on my inlaws for survival means financially.

Time for the pride to be swallowed and get on disability!

Keep your chin up and I'll do the same :-)

love and hugs
bim

What Nut said about our culture is so true- both work and money are put on a pedestal, and if you work hard and have alot of money you're "successful"-if you don't work at all you're a "loser". That's why I love to get out of this country at least 2 times a year and visit other cultures- it gives me a totally different perspective and new enjoyment of life, because believe me I start to fall into this way of thinking too. Please remember that YOU are the treasure that cannot be replaced!
Valerie

Valerie, and everyone in this forum. I want to thank you for all of your positive feedback. That has meant so much to me. God Bless each and everyone of you. I went to church this morning... even though I had a horrible migraine because my Pastor has terminal cancer and may not live much longer. His birthday is on Wednesday the same as my Neurology appointment and I just had to be there to wish him a happy birthday. It was a wonderful sermon, glad I didn't miss it.

I wanted to reply to you message Valerie, but now I took my Axert and some Naproxen and I'm going to lay down. All of you are in my prayers.

I just wanted to chime in and say that I've been on disability for the past nine years for my migraine - I used to be a health professional, but that's on hold indefinitely.

When people ask what I do, I usually tell them that I am a (you fill in your own blank for your own job) by training, but that I've been on medical disability for nine years because of a neurological condition. I find that people are less nosy about "neurological condition" than "migraine", and I usually ease the word "migraine" in later.

You are NOT useless. None of us are. It took me a few years to accept that my contribution to my family's life had importance, even when it was pretty minimal - and that I am more than a job. I still miss my job terribly, and I understand how you feel.

I handled being on disability a whole lot better once I started structuring my days more. Obviously a lot of flexibility is warranted - since sometimes my to-do list is "instruct kids to take care of themselves, attempt to take a shower, greet kids when they come home from school, tell them i love them, sleep till dinner". Still, having a structure for the better days is half the battle for me. Plus keeping in touch with friends.

There are plenty of us out there on disability. And they don't hand it out easily either, so I assume you had no other choice. Don't beat yourself up. You've got your health to think of - use your energy for that!

I wish you luck.

Lynne

I am on temporary disability and have filed the paperwork for permanent disability through my retirement system and haven't heard yet the results of that.

What I have a problem with is not being disabled but feeling guilty on the days when I DO feel good. When I'm in bed with a killer migraine, I feel justified being on disability. But if I feel good, I feel guilty going out shopping or doing something pleasurable. I feel like I should be working or at home instead of enjoying myself. Rationally, I know I deserve to enjoy the good days but I still feel like I'm scamming the system or something and it bothers me.