Tuesday, January 29, 2013

Hibernation and Soup

The last week has covered my little world in an unusually harsh cold snap. The afternoon light was cold and grey, it sank deeper than my bones. All I have wanted to do for weeks was hide beneath my down comforter and disappear.

I've previously written about how the cold is my personal ticket to "Pain-town;" I also think that the change in barometric pressure affects me like a witch in one of the fairy tales I read my daughters.  January has brought me many symptoms and with my girls I need to make accommodations because they don't slow down and our lives hurtle forward through the ice storm.

Over the past week I've had made two runs to the pediatrician. Keeping with my fairy tale theme, the baby caught Molluscum Contagiousum from an object. They bumps cause her no discomfort and will go away on thier own. I have had the urge to point a wand at someone and shout "Molluscum Contagiousum!" Convinced it will get me into Hogwarts on scholarship. To maintain balance and keep the sibling rivalry at bay, I have simultaneously been having a wonderful time remodeling with my tween.

Finally, I'm writing this blog on my phone with a very grumpy toddler in my lap. My baby is cutting both her canines at once.

She howled intermittently throughout yesterday afternoon. We went to her Art and Music class and she was too irritable to create a baby masterpiece or participate in the rumpus with her friends. This morning she woke up at 4:30 and insisted her father entertain her. From the amount of anguish the eruption is causing her, I fear she is turning into a were-baby.

We've given her a pain reliever and baby Ora-gel and this afternoon I will walk out on the Moors and look for some Wolves-bane to hang over her crib as a precaution. (I think I read that somewhere...again, too many fairy tales)

My sweet baby has been my Winter savior. Through this cold spell, when she takes her morning nap I steal a moment to hide under blankets and read email. When we wake up we have a second breakfast of warm porridge and watch Sesame Street in a nest of pillows and blankets. After lunch we enjoy an afternoon nap to gain strength for tween activities. I sleep while she the baby does.

On reflection, it is an ideal lifestyle for any Hobbit or Bear. Even so, I'm not feeling my usual game self and have resorted to an extreme but amazingly successful shortcut for soup. When it is cold soup is my favorite dinner to prepare and serve and I drink tea to warm and revive me all day.

My bean soup or chili is the easiest thing I know to make and a never fail. I'm sharing the recipe here as a gift to all Myalgia Mommies. In college it was a weekly tradition with a small circle of friends who did not know how to cook and were easily impressed.  I would buy and prepare the base: a white onion, clove of garlic, can of stewed tomatoes, can of black ranch style beans and ask each of half a dozen friends to bring a can of beans. As each person arrived they would add thier can and I would add more salt and whatever vegetables where left in our fridge, there was some show we used to watch but it must not have been very good because I can't remember what it was. The bean soup always came out great.

Now I sauté ground beef with the onion because my pediatrician tells me my daughters need the iron. A handout about high iron foods for children stated that adding meet to the beans increases the iron absorption rate.

Over Thanksgiving I learned the ultimate Myalgia Mommy recipe from my husbands Great-Aunt. She is an amazing woman in her 80's who is still living independently in her home surrounded by her collections from a lifetime spent as an RN-PHD who traveled the world teaching nursing skills to others. She was a working mother during decades when it was unheard of and I was amazed at how she enjoyed being in her kitchen. She didn't. She loves food but considers the preparing of it to be tedious.

She prepared a quick meal for us when we arrived by combining three unlikely cans of prepared soup: a clam chowder, a minestrone, and a third barley stew that I would never have bought or thought to eat.

The result was not very attractive but surprisingly delicious. Each bite was a mysterious combination of taste that you couldn't quite place but managed to somehow harmonize. Surprise soup. With a loaf of fresh crusty bread from a local bakery, I had two servings and was in love.

So tonight if the weather, the day, or the many vagaries of life have made dinner a challenge, pick three random soups (don't look at the labels or think about it!) and you have a winner.

On a special Myalgia Mommies note: Yesterday CW, the inspiration and creator of this blog, celebrated another birthday. I only remember my family members birthdays because my brother calls me. Thank you Facebook!

So, today I have to leave my warm sanctuary to find a gift for an amazing friend and gorgeous human being. Also, since it will be at least one day late it has to be REALLY awesome. Please feel free to post suggestions.

I need to make some strong tea for this mission.


Sunday, January 13, 2013

Happy News for Our Deanna Project

Our Deanna Project is coming to a nice close. The girls are going home to their mother and the youngest will never know what happened.

All DHS charges against Deanna are being dropped and I never got to make a public appearance as her expert witness, personal shopper and Myalgia Mommie back-up.

So I am smiling. We Myalgia Mommies are highly effective at communication through the written word and well placed phone call. All of this adventure is in greater detail in previous blog posts and a possible alternate blog, Instagram account, and on twitter.

The past week I have been talking more on twitter and blogging less. I have no idea what this means. Honestly, I'm still not sure what twitter is all about.

Enjoy the weekend,

I may "tweet" about it,



Thursday, January 3, 2013

Silver Ribbon Campaign For the Brain

In 1998 on an October night my Mother, Margaret Ray, became the first punch line in Mental Illness.  When she committed suicide, she made the front page of the NYT, my name was also printed in the story and as a result, she chose my career as a Mental Health Advocate.

Throughout my childhood my mother suffered from a brain disease that made her progressively sicker. Her psychosis and brain damage from chronic illness led her to believe that she was in a romantic relationship with a late night talk show host. Her name became a joke about stalking (http://investigation.discovery.com/investigation/crime-countdowns/stalkers/stalkers-05.html). It should have been a statement about our inability to get care for a brilliant, beautiful mother.

After my mother died, my family founded The Margaret Ray Memorial Foundation. My Grandmother and I both worked on legislation and every level of advocacy over the last 15 years to change the way that Mental Illness is treated in the US.

At every opportunity we give silver pins that have a sticker stating "compliments of the Margaret Ray Memorial Foundation" we have distributed hundreds if not thousands of silver pins.

The Silver Ribbon Campaign is for all brain diseases: Autism, Mental Illness, Alzheimer, and the tragic brain tumors that sneak up and strike down adults in their prime. Included in research for the brain is also epilepsy, stroke, and the illness that plagues me: migraines.

So I wear a Silver Ribbon for many people, a dear friend who died of a brain tumor, many mothers who struggle to raise children with Autism or Mental Illness, my mother and myself.

This year I am going to set up a separate site to continue my work in Mental Health Advocacy under the name Margaret Ray Memorial Foundation. If you re interested in Mental Health issues please follow my work there. In the last decade everything about our Mental Health Policy has changed.

Most states have Assisted Outpatient Treatment (I worked for Treatment Advocacy Center when they were writing the model AOT law) the new Affordable Care Act will cover services for all brain diseases equally. Now is the best time in history to have a brain disease.

The work is not done. We all need to wear a silver ribbon. I wear one everyday. If you would like one, please contact me, NARSAD, NAMI, The Margaret Ray Foundation (me) or make your own.

Happy New Year.


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