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30 Things About My Invisible Illness You May Not Know

invisible illness awareness week“But you don’t look sick” is a comment people with chronic illnesses hear a lot. And it’s true — 96% of all chronic illnesses are invisible, according to the folks behind Invisible Illness Awareness Week — but just because an illness can’t be seen doesn’t mean it isn’t real or debilitating.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraine

2. I was diagnosed with it in the year: 2002

3. But I had symptoms: All my life and have been chronic since I was 11

4. The biggest adjustment I’ve had to make is: Reconciling who I want to be with the limitations I face due to migraine (also, learning patience and flexibility)

5. Most people assume: Migraine is just a headache. Headache is a major part of migraine, but it is a neurological disorder with symptoms that can be felt throughout the body.

6. The hardest part about mornings is: Not knowing how much migraine will impact my plans for the day

7. My favorite medical TV show is: Scrubs

8. A gadget I couldn’t live without is: My Kindle

9. The hardest part about nights are: The nightmares and night sweats that accompany migraine attacks

10. Each day I take at least 17 pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I’ll try anything that won’t harm me (and have even tried some things that are a little dubious)

12. If I had to choose between an invisible illness or visible I would choose: It’s hard to know for sure, but I appreciate being able to hide my illness when I want to.

13. Regarding working and career: I’ve gone from thinking I’d never have a fulfilling career to realizing I’ve been building one all these years I’ve been blogging. I just needed to feel well enough to take the next step… and I think I’m almost there.

14. People would be surprised to know: Just how much pain and fatigue I have on “good” days

15. The hardest thing to accept about my new reality has been: Hard work doesn’t always reap rewards

16. Something I never thought I could do with my illness that I did was: Find a fulfilling career

17. The commercials about my illness: Make it seem like migraine attacks are easily controlled with medication (they are for some people, but not at all for others)

18. Something I really miss doing since I was diagnosed is: Making plans without the caveat that I may have to cancel

19. It was really hard to have to give up: Food (literally for a while, now I have an extremely limited diet with only a few foods I truly enjoy)

20. A new hobby I have taken up since my diagnosis is: Meditation

21. If I could have one day of feeling normal again I would: That’s not something I let myself think about

22. My illness has taught me: I am stronger and more courageous than I ever thought possible

23. Want to know a secret? One thing people say that gets under my skin is: Positive thinking will “cure” me

24. But I love it when people: Keep in touch even when they don’t hear back from me.

25. My favorite motto, scripture, quote that gets me through tough times is: “When you’re going through hell, keep going” and “Never, never, never give up” — both from Winston Churchill

26. When someone is diagnosed I’d like to tell them: No one is going to cure you. Health care providers have valuable knowledge and can help you, but they aren’t mechanics. You have to play an active role in you own care, investigate potential treatments and be willing to pursue unexpected avenues.

27. Something that has surprised me about living with an illness is: How often people are blamed for being sick

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband telling me that when I don’t feel like I have the strength to continue, he’ll carry me

29. I’m involved with Invisible Illness Week because: Being open and honest about illness is the only way anyone’s beliefs about it will change

30. The fact that you read this list makes me feel: Cared for

Want to respond to the 30 things meme but don’t have a blog? You can leave your responses in the comments!

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Headache Disorders & Migraine Blog Carnival: Last Call for Submissions

Submissions for the September Headache Disorders and Migraine Blog Carnival are due tomorrow, Sept. 5, by 11:59 p.m. Invisible Illness is the theme of this month’s carnival. Let us know your thoughts on the pros and cons of having an invisible illness or respond to the 30 Things meme sponsored by the 2014 Invisible Illness Awareness Week, which will be Sept 8-14.

To join us, email the link to your post to kerrie[at]thedailyheadache[dot]com and include the following information with your submission:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you’re submitting.
(3) The url of the blog post you’re submitting.
(4) The title of your blog.
(5) The url of your blog.

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Call for Submissions: September Headache Disorders & Migraine Blog Carnival

In honor of Invisible Illness Awareness Week, Invisible Illness will be the theme of September’s Headache Disorders & Migraine Blog Carnival, which I’m hosting here on September 8. Let us know your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

To join us, email the link to your post to kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific time on Friday, Sept. 5. Please include the following information with your submission:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you’re submitting.
(3) The url of the blog post you’re submitting.
(4) The title of your blog.
(5) The url of your blog.

I’m looking forward to reading and sharing the submissions!

 

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Enter to Win TheraSpecs & Raise Migraine Awareness

theraspecs_migraineTo raise awareness of the magnitude of migraine and celebrate Migraine & Headache Awareness Month, TheraSpecs is giving away two free pairs! Follow this link and leave a comment on TheraSpecs’ Facebook page about how light impacts your health. That’s all that’s required. Raise awareness by sharing the image — and it’s sobering statistics.

Update 7/2/14: Thanks to everyone who shared their story and the image. We reached tens of thousands of people with these startling statistics on migraine. And a TheraSpecs customer offered to purchase a third pair for us to give away, so we’re pleased to announce THREE winners. Congratulations to Vivian Leelee, Sherry-Sharon Bowen, and Christy Grandon!

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An Urgent Request for Cluster Headache Treatment

Oxygen is one of the few effective cluster headache treatments, a viciously painful headache disorder that can be disabling. Several years ago, Medicare decided to stop covering it for cluster patients. The American Headache Society appealed to no avail. Now, Nebraska Senator Johanns and Delaware Senator Coons are trying to get the decision reversed and are currently circulating a letter for other senators to sign. The more senators who sign the letter, the higher the chance of success.

Please contact your senator TODAY to ask them to sign the letter requesting that Medicare reconsider covering oxygen for cluster headache treatment. And I do mean today — senators must sign the letter before 5 p.m. ET on Monday, May 19 Thursday, May 22. All you have to do is follow this link, fill out the form and click “submit.” The next page lists your senators as recipients and has a letter already written. You can edit the letter, if you’d like, or just add your name at the bottom and click “submit.” That’s it. I just did it and it literally took less than a minute.

Even if you don’t have cluster headache, please submit a request in the spirit of solidarity. Any recognition of the severity of any headache disorder and improving access to treatment is a win for all of us.

5/19/14: The deadline for senators to sign has been extended from today to Thursday. If you haven’t submitted your comment, you still have time! As of 8 p.m. ET today, nine senators have agreed to sign the letter.