Sunday, September 30, 2007

But You Look Good.

Through Myspace, I found a great online resource called The Invisibile Disabilities Advocate. From their website:

Do You Live with Chronic Illness or Pain?

"Do your loved ones have a hard time understanding how your symptoms such as extreme fatigue, pain, dizziness and cognitive impairments can be debilitating?

The Invisible Disabilities Advocate strives to help friends and family better understand chronic illness and pain, as well as learn how to be a source of encouragement and support.

IDA offers articles, booklets, pamphlets, links, an online support group, a discount book store, t-shirts and more to help you and your loved ones forge the journey with limiting conditions."

And I just finished reading their booklet But You Look Good which I ordered online from them, and it was a very helpful, insightful and informative like the book "Beyond Casseroles" and the dvd "Life and Migraine."

"But You LOOK Good! is a 52 page booklet that gives those living with chronic illness and pain a voice about how they feel, what they need and how others can be an encouragement to them. It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest!"

The problem I'm having though is getting the people in my life to read and watch these things with me, which I think would help them dealing with me and my chronic migraines, but everyone is very resistent. I tried to get a relative to watch "Life and Migraine" with me, to which she replied "Why on earth would you want to watch that? You are already living it."

And I tried to get a friend to read "But You Look Good" and she said "I already know how to deal with stuff like that. I don't need anyone telling me how to do things."

Any suggestions?

Thursday, September 27, 2007

Pill Pictures

Seeing how Migraine Barbie has been hiding in her bedroom with an ice pack on her forehead, I decided to try to take some pictures of pills. I finally got the Midrin, but I haven't tried it yet, because like Barbie, I'm in the middle of a nasty pain spell with a healthy dose of depression because Aunt Martha (my period) is a bitch. So the red and white pills are the Midrin, and the long white pills are magnesium, which I've still been taking, but I don't know why because they don't seem to have helped much.

Saturday, September 22, 2007

More Migraine Mascots!

I've been collecting more pictures of migraine mascots. Here we have "Migraine Mutt" and "Peep This," but I think my favorite right now is Tofu The Vegan Zombie. I'm not sure if he has a migraine or not, but he certainly looks like he has one!

""Tofu" is a friendly zombie, created from a botched experiment in Professor Vost's laboratory. Monkey # 5, one of Vost's lab animals, stuffed a block of tofu into the zombie boy's open skull after accidentally losing the brain. As a result, "Tofu" eats only vegetables and grains and has no taste for human meat. However, if "Tofu" ever loses his "tofu-brain", he turns into a dangerous zombie creature, craving human flesh."

Thursday, September 20, 2007

Clean Brain

I’ve been addicted to a tv show on the Style Network called Clean House right now, especially when I’m having a bad pain day. It doesn’t take a lot of brain cells to follow the show’s format.

“Are you drowning in disarray? Still clinging to that scary ceramic clown display in your living room? You're not alone! Style Network's Clean House is helping families beset by decorating disasters straighten up their spaces.

Each week, one cluttered clan puts itself at the mercy of host Niecy Nash (Reno 911!) and her crew of interior designers and organizers. They decide what stays and, more importantly, what goes--by way of a giant yard sale. Then they turn around and pour the proceeds into a much-needed home makeover. Think of it as residential rehab, an interior intervention. Tears are shed and arguments often ensue--but the final outcome is always shocking and inspiring!”

After watching so many episodes, I’ve decided that they now need a show called “Clean Brain.” I need Niecy Nash and her crew to step into my melon and whip it into shape. Niecy will say my brain is a “hot mess” and it’s filled with “foolishness.”

She'll point out that my brain in desperate need of a makeover, and I'll shed a couple tears with her. Then her crew will whip my brain into shape. They will organize it and redesign the interior so it will be pain free!.

Monday, September 17, 2007

The 2007 APF Pain and Creativity Exhibit!

From the APF website:

"Living with pain or caring for someone affected by pain always stirs strong emotions. Has pain ever inspired you to create art? Have you used art to work through your pain?

The American Pain Foundation, in collaboration with The HealthCentral Network, is calling for submissions in a variety of art forms (film, sculpture, words, painting, quilt blocks, etc.) from people who have pain or from people who are affected by pain. A select group of artists and their work will be chosen as finalists, and will be prominently featured online and in print publications by The HealthCentral Network and the American Pain Foundation.

To be considered for this opportunity to be honored and have your work featured, we need your submissions by September 20th.

You can view all the entries in The Pain and Creativity Exhibit here."

I thought this looked like a really cool idea, so I posted my Bad Migraine Haiku. I don't know if anyone will accept them as legitimate poems, but I thought I would try.

Sunday, September 16, 2007

Migraine Barbie and Her Drugs!

Migraine Barbie was worried she might not have enough drugs for her next Migraine, so she was calling her doctor quick!

Thursday, September 13, 2007

"What's up?"

I'm so impressed with all the online support I received with my Amerge nightmare. I truly have wonderful migraine friends and I appreciate everyone who wrote me and left me comments.

Well, I considered everyone's advice and I called my neurologist. I had to leave a couple messages about the nightmare before I actually got through to her. Then when I did speak to her, I told her who I was and she said "What's up?" in a really casual tone which I thought was a little bizarre for a professional. I told her about the nightmare Amerge reaction and she said "Oh maybe you shouldn't be taking any triptans. Don't take the Amerge anymore." You think? I wanted to say to her.

She said I should try Midrin next, which I haven't tried and a couple online friends have recomended to me. She's calling in a prescription for me, and she said to let her know how I was doing in a few weeks time.

I'm thinking about trying the Midrin, but the instructions online say to take it at the start of a migraine. Since I'm having chronic daily migraines there is no real start or stop to them, just varying degrees of melon pain.

Then I read the Midrin side effects and I started freaking out, thinking about more trauma trying a new drug.

All this drug stuff is seriously giving me a headache just thinking about it.

Tuesday, September 11, 2007

Nightmare Reaction!

I saw a new neurologist recently and she wanted me to try another triptan (migraine abortive drug), even though I told her how I had many bad side effects with them. She prescribed Amerge because she said it was not as aggressive and longer acting than some of the other drugs.

Seeing how desperate I have been lately for migraine relief, I decided to try it last night. What a big mistake. I had a bad reaction to it. I had palpitations, chest pain, neck pain and tightness in my chest. My heart was pounding like crazy. There were bizarre stabbing pains in my head, and I was dizzy and nauseous.

This was so much worse than the last time I tried one. I didn’t even want to move because I was afraid of what might happen, but I managed to call a friend to come over and sit with me. I was so close to asking her to take me to the emergency room.

For three hours, I felt like I was going to die, and it didn’t even help my migraine!Finally, the symptoms wore off. Even if it had helped my migraine, I would never go through that again.

Now I’m so depressed because that neurologist had talked this drug up so much and I felt a glimmer of hope, only to be crashed back down on the rocks of migraine hell. (sorry to be so dramatic) I’m not even sure I want to call her. What is she going to do for me? Toss another expensive triptan drug at me?

What would you do?

Monday, September 10, 2007

Life and Migraine

Over the weekend, I watched the film Life and Migraine that I bought online. It seemed a little expensive at $24.95 at Film Baby, but I told myself how often have I seen an actual documentary about migraines. Here is the description from the website:

"Headache is probably the most common painful illness and also the most misdiagnosed. Life and Migraine tells the story and it empowers the viewer to seek the best care possible.

This documentary presents an accurate view through the eyes of 13 real people who have come to grips with severe headaches. They share their struggles and their successes and they leave you with the message that help is available."

What I really liked was how they not only had interviews from real people with migraines, but they had a composite character go through out her day with a migraine from waking up, going to work, trying to see the doctor and going to the emergency room.

The movie covered losing time from your life because of migraines, absenteeism from work, cognitive problems and mood swings, fuzzy brain, not being taken seriously and being blown off by doctors. They dealt with frustrations at the Emergency Room and only getting temporary relief. It expressed how much a migraine sufferer needs support from friends and family.

The most interesting thing I thought was how they discussed migraines being misdiagnosed as sinus headaches. I had sinus headaches for years before my migraines started, so now I'm wondering if I've had migraines for longer than I thought.

Over the biggest message from the movie was "Be Your Own Advocate."

Friday, September 7, 2007

More Bad Migraine Haiku

The migraine monster is still stomping on my head and I have to go to work today. Ugh! And tomorrow, I have to go to the dentist for a crown. Will this week ever end?

Here is some more Bad Migraine Haiku that I've been working on recently. The last one really suits my mood today!

Not tonight honey,
My heads hurts, but I love you.
True romance migraine.

Squirming snakes dancing
Inside my brain, throbbing pain
Migraine Medusa

Skull screaming fire
It’s only my migraine brain
Playing insane games

Wednesday, September 5, 2007

Bad Day

I'm home sick from work today with a huge head pounding migraine. I didn't get out of bed until 5:00 p.m. to go scrounge for some Easy Mac for dinner. This sticker is really how I'm feeling today.

Sunday, September 2, 2007

Picture Puzzles

With my vision and concentration problems because of my migraines, my reading has been hard enough to keep up with. Puzzles have definitely been out. I've never been great at crosswords to start with, but I liked to do word searches once in a while. I tried to do Sudoku a couple times, but it's too much like math (one of my least favorite subjects.

Then I found these Life: The Original Picture Puzzle books at the bookstore. They are "spot the differences" type of pictures, and I can actually do them, even with moderate migraine pain. The pictures are super cute, too.

Book Description from Amazon

"The most popular feature in Life magazine every week perhaps the most popular weekly page in any American publicationis the Picture Puzzle. This game has become a must-have activity in a great majority of the 13 million households Life reaches every Friday. Hundreds of Life's readers have demanded "We want a Picture Puzzle book!" And here, in a special 192-page collection, that demand is met. There are variations on themes and variations on the game itself, as scores of color and vintage black-and-white photographsmany from the famous Time-Life Picture Archivesare twisted, doctored, and otherwise toyed with, all in the name of fun and entertainment. For the first time, the Picture Puzzle is offered in three different degrees of difficulty. Like the Ultimate Crossword book before it, this book will fly off the shelvesnot just in bookstores, but in airports and supermarkets. From the first issue of the new Life magazine, Picture Puzzle has been a hit, and the same will be true of Life's Picture Puzzlefrom the moment the first copy hits the shelf. "