Seems like everyone has advice....

Yes, I have an invisible illness. You can't see it, and if I didn't tell you I had it, you would probably never know.

Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.

For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".

Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.

You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.

It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.

The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.

Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!

I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.

So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.

There are a lot of great organisations and support out there if you suffer from Migraine:

My Migraine Connection

The Alliance for Headache Disorders Advocacy

MAGNUM

The Migraine Research Foundation

The National Headache Foundation

Oh, and I can't pass by this little tid bit either.

If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of Teri Robert's Friends and Family Letter and help educate them!


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network


I just wish for those who don't understand to maybe think before they make comments.

AHDA needs letter sent TODAY!!!! ACT NOW!!!

Ok - sorry this is going to be a super quick one because I'm working - but I just got my AHDA action alert email which I will paste below - please go to the site http://www.allianceforheadacheadvocacy.org/ and email your senators - RIGHT NOW - TODAY - LET'S GO!!! MOVE IT!!!


Please Email Your Senator Today!
Dear Mrs. Gray:
Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill.
It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th.
Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/home/ and send your message to your two US Senators
Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders.
Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact.
Thanks again for your efforts.
Robert Shapiro, MD, PhDWilliam Young, MD,Teri Robert, PhDBrad Klein, MD, MBA

Please sign up for the AHDA email alerts!!!

This is my first shot at solo video.....it's not great, but it gets the point across. I'm putting this rough draft up now to get you all to move your butts and sign up for the AHDA email list. The second wave of emails are coming up - and we don't want you to miss it!!!! Please, sign up at The AHDA website NOW!!!!!