Prompt: Choose your favortie blog post from any of this month’s prompts from someone else’s blog to share with us, and tell us why it’s your favorite.

My favorite post was the one from Nancy Bonk’s daughter, Sarah. (Through My Daughter’s eyes, Day 25.) Her letter explaining life with a mother dealing with Migraine disease, and the pride that her words showed for her mom were just so inspiring. It also let us in a window to their lives, with humor, grace, and love. Nancy’s blog post for that day made me cry- good tears, and I was so happy to have read it.

Thank you, Migraine Blogger family- this has been wonderful, reading each other’s posts and having a reason to write each day.

I hope we’re all aware of the strength, wit, pride and tenacity shared by all. We can do it, and we will change the world.

Taking from the history of the AIDS movement, “Silence= Death.” But once the families, friends and others who knew people with the disease started to shout for change, they began to create change. Ronald Reagan was forced to say the word aloud. “AIDS.” Money started to be allocated. We can learn from their experience, and ACT UP! Let our allies join in our crusade. Speaking out creates a community of advocates.

The next time a petition is sent, sign it. Send it to people you normally wouldn’t. It’s okay. They need to see it, and there’s no reason to feel ashamed, or like you’re complaining. You’re not. You need them. Make it clear that they’re your ticket to change.

In the words of President Obama, “Yes we can!”

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt: “More Often that Not.” Today is Chronic Migraine Awareness Day. People with chronic Migraine have a Migraine more often than not. Think of and share a random act of kindness that you could do for someone with chronic Migraine.

Things People have done for me/I’ve done for others/Heard about and stored for use for other people

—-Moved my mom’s car from one side of the street to the other in NYC where there’s alternate side parking- i.e.- no parking on certain days so the sanitation dept. can clean the streets (HAH). If your car is still on the old side, you get slammed with $$$$ tickets. I did this after she had surgery, but it’s just as appropriate for a Migraineur.

—-a couple of people decorated a trash can for a fellow puker… sorta like signing a cast- drew on it, wrote happy notes, made it look friendly in the house- and not like some intrusion that reminded them that they threw up often and for long periods of time.

—-Was given a restaurant.com gift card in an envelope, after canceling on a friend oh, a billion times… with a note that said “Anytime you’re up to it- we’re going out for dinner!” Made me feel good that they were willing to drop everything, and also since money’s tight, I wouldn’t have to pay.

— My mother stayed with us when I came home from weeks of treatment, as I couldn’t take care of myself, and DH had just broken his leg in 3 places, requiring surgery, and couldn’t get out of the desk chair. She cooked, cleaned, drove DH to the doctor, etc. I think that possibly staying with someone for a night if they’re alone would be a huge gift- just to know that there was someone there, even if all the person who was staying with the Migraineur did was watch tv, and not interact at all. It’s comforting to know you’re not alone

-A friend asked me for a specific list of things I liked to drink during the day when I was getting dehydrated, and showed up at my door with all of them.

Think outside the box, there’s so much more than bringing a casserole…

-change the cat litter
-play with the dog/take it to the vet
-do a load of laundry/ take it to the laundromat
-surprise them… instead of flowers… perhaps get them new pajamas- same cost- much more useful.
-ice packs or heating pads are ideal gifts.

Remind them that you’re not going anywhere- you’re in it with them for the long haul. (that one’s a free gift, and priceless.)

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

The story is set in England and takes place mainly at a family home where Daniel and his wife Jane live with his parents. When the story opens, it is the day of Daniel’s father’s funeral …

Daniel’s cousin Martha and her fiancé Simon are desperate to make a good impression on Martha’s uptight father Victor. Their hopes for doing so are dashed when Martha, hoping to calm Simon’s nerves, gives him what she believes is Valium but actually is a designer hallucinogenic drug manufactured by her brother Troy, a pharmacy student. While on the way to the funeral, Simon begins to feel its effect.

I can identify with Simon. During an aura, everything feels wrong, and I feel like I’m tripping over my words, I’m clumsy, and I’m absolutely stupid. If something happens, I’m likely to have swinging emotions, and you’d wonder what I was on, if you didn’t know it was an aura. Add the meds to it, and I can start doing more of Simon’s antics. Pain meds can make me fall asleep at the drop of a hat. They can also make me clumsy and brain fried. Unfortunately, for poor Simon, his experience with the hallucinogenic drug trips him up too. Literally. Simon believes he hears scratching noises in the coffin, and tips it over. The body spills on the floor.

I can see myself doing that with a pounding head, or with scotoma, or just the meds. Simon’s antics aren’t over for the rest of the day. The actor playing Simon is just wonderful, and ever since seeing the film, I’ve thought that these are all things that I’d be capable of doing during Migraine.

Maybe this?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

:Prompt:Talk about who inspires you to keep trying and not give up, despite your Migraines.

This one’s really simple. Me.

If I’ve been through all of this pain and suffering, there’s no way I’m giving up now. I may want to sometimes, but there’s just too much I have left to see, too many dreams of a cure, too many songs left to be heard and too many musicals I’ve yet to play my way through at the piano.

Too many tears, too much laughter, too many hopes, and people I’ve yet to meet, to make imprints on my life.

And I don’t think it’s in the cards that I’m supposed to die from Migraine Disease, or anything related.

But, If it is, then donate my brain to science, and let me help you find your heart and music.

Until then, I’ll keep plugging along, playing my guitar like a rockstar in my head on days that paper is too bright for my eyes, and struggling with the chords on days that I can learn to play.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt: Write about what you think your family, friends, and others think a day in life, a day with Migraine disease is like.

This was written by my dad:

Jamie,

I have been fortunate to have been free of pain for most of my life. I guess I inherited it from my father who at 100 can still get around with the aid of a walker virtually pain free.

My mother was not as fortunate. While she lived a long life (89 years) she had many physical ailments. I guess that she is the source of your problems.

How you manage to cope with your migraines is truly amazing. If I have a headache (very rarely) I can take a couple of aspirin or Advil and within a short period of time the pain is gone. Unfortunately you are not as lucky, being forced to take various medications some of which are necessary to combat the side effects of those whose function is to alleviate the migraine. There are times when your migraine lasts for days which is a very dangerous situation. Yet through it all you rarely complain. I don’t know how you do it! While the severity and frequency of the migraines for the most part has lessened since you first started having them, they can occur at any time. One is too many. If I could take the pain from you to myself, I surely would. You do an amazing job of coping. Keep fighting.

Hopefully with the inroads that medicine ahs accomplished in the last few years in so many fields, this too will be able to be controlled and eliminated.

—————-

This was written by my husband.

Jamie wakes up briefly to acknowledge that I’m leaving work, and goes back to sleep because her head hurts. After I leave our cat, Preston, jumps up to comfort her. She wakes up an hour or two later, and staggers to the couch because her head is still painful and foggy. A post or two on Facebook to let the world know she’s not particularly responsive, and that’s all she can manage because looking at the computer screen causes pain somewhere back behind one eye. A little while later she finds the energy to open the ‘fridge or cabinet to find something that can be eaten immediately - trying to prepare something would be futile. Daytime TV is on in the background - probably the court TV shows - to help pass the time. If she’s lucky the migraine will break during the afternoon and then she’ll have to keep awake because you can’t count sleeping hours toward the 4-hour-migraine-free time. I’ll get home around the time of the 4 hour mark and not realize she’s been in pain a lot of the day.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

I wish I had written this yesterday, instead of writhing in pain.

I wish I didn’t have to make a list of Migraine related things that were wishes.

I wish I could have my life back pre- age 26. While the things I’ve learned since then are priceless, I miss not having to know my insurance plan backwards and forwards. To stand up for Migraine-related medications that I need. To stand up for Migraine-related treatments that I need.

I wish that more money went from the NIH to funding this insidious disease, and that more of us could be helped.

I wish that my parents didn’t have to see their only daughter go through all of this.

I wish I could have back all of the days I lost to Migraine. I wish that they could be dropped into a piggy bank for me to use to go do events that could help others- to spend time creating something positive.

I wish we didn’t have to worry about politicians messing with our insurance.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Dear Mom,

I know you’ve had a rough couple of days. I’ve been snuggling with you as much as I can. Keeping my face pressed against your face, sleeping on you, wrestling with the cold from your ice packs, ‘cause I don’t really like cold.

I’ve only known you with Migraine- you adopted me while you were on FMLA when I was a teeny tiny kitten. I’m your big boy now, and I see how you hurt, and I love you. While Dad takes care of you while he’s home, you know I’ll always be there to take care of you when he’s not here.

I can’t take the pain away, but i see how you smile when I kiss you, or scoot against you for hours on the couch. You listen to stuff, but I don’t know what it means. I just know it means that you’re not doing well.

I love you, and I always will,

Your big furry Cat,

Preston

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt:Tell us about a time your plans changed due either an unexpected Migraine or an unexpected Migraine-free experience.

Gah, I’ve had so many plans changed due to Migraine. But, I do have an experience that I wouldn’t have had if I hadn’t been in Texas in a horrible Pain Cycle.

I got to go to the Texas State Fair. The Migraine that I had gone in for IV therapy that morning had mostly died down, and I was feeling much better. My mom and I were in Dallas, and we were going to go to a museum, or walk around a mall for a bit. Instead, I was able to borrow a wheelchair and go to the fair.

North Carolina has a great fair- but due to the size constraints of the fairgrounds, it’s smaller. Maybe just more compact.

Here are some pictures.

Anyhow- because of my Migraines, I was in texas at the right time to go have fun. Also, thanks to the wheelchair, I didn’t have to walk. I had fun, and people were really nice to me.

The vendors actually wanted to help me win a prize… never had that experience before. Never will again… they let me get the bigger prize even though there were just me and my mom playing- where normally they needed four to start the game for the little prize. I came “home” to the hotel that night with gobs of stuffed animals and a big smile on my face.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt: What’s your biggest Migraine related fear. How do you cope with it?

My greatest fear is also something that happened already. I don’t want to go through it again. Medication poopout.

I was doing so well, Meds working, episodic Migraine- only 3 per month. Gosh, I was doing so well. Until the magic was gone, and I was back hurting. And I fear that it’s never going to get back to where I was only a year ago when my antidepressant decided that it was time to stop working.

I spent more time trying different meds, dealing with the side effects.At one time,feeling suicidal, but knowing that it was due to the Prozac- a wonder drug- once upon a time. Scratch that. Try Pristiq, fight the insurance- for what?

A half-baked attempt at both Migraine prevention and Major Depression/Dysthymia control.
Crying in the dark, crying in the light, pain- but at least there was some improvement. Not enough, said the greedy girl.

Back on Cymbalta, at a higher dose. No, it doesn’t do the same prevention as before, but I can tell that it’s doing something, as I feel better.

My greatest fear is that the meds will blink out again. I want so badly to get to the point where it’s episodic, and there’s no way that anyone could ever diagnose me as having chronic Migraines again. But I’m right on that cusp… and I don’t want to fall off the cliff. I want what I had. I don’t want this.

I don’t want to scare people with the circles under my eyes, or look so awful that people say that I should relax. Don’t you know that relaxing makes me more self-pitying? I want to run, to scream in pleasure, to drive with the windows down, blasting my favorite tunes.

And I don’t want to be in bed.

So, I fear that even though things aren’t as wonderful as they were before the Cymbalta poopout, and the return of my dysthymia, this won’t last. And I shake in my boots= my very comfy black crocs brand boots.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt: “Run, Forest, Run! Describe the approach you think is best when it’s time to move on to a new doctor.”

Commit to the fact that this doctor is no longer the person you want to see. Easier said than done. Familiarity is a beast.

Get your records before you leave the practice. It’s amazing what can sneak in there once you’re gone, and they don’t think you’re going to challenge the statements in there

Audition new doctors. That’s right- audition. If they don’t have their lines right, or don’t say them correctly, or don’t have the script correctly- toss their resumes.

Hopefully, find doctor right. If you’re wrong about that, try try again.

It’s okay if they see you when you don’t see you at your best. It’s another telling sign if they’re what you’re looking for. My specialists have seen me at all ranges of health- from throwing up mid-sentence, to smiling in their office. That comfort is priceless- I feel like I can totally let down my guard, and be me with them.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com