Botox for inner Beauty and Perfection

The day before Valentines Day I miraculously was able to get a same day appointment with my neurologist. She is basically my primary care doctor, she works for a chronic pain and headache clinic, has a young daughter and I love her.

Since the appointment was made with only a few hours to get ready I brought my baby in with me. No time to find a sitter, I'm new in town. Honestly. I just don't trust many other people with my children. Dr. Alice (my pseudonym since she looks like Heather Graham or a grown up Alice in Wonderland❤) counseled me through my pregnancy, nursing, weaning and has heard about the babe at each step. She was charmed by her in person.

My Valentines surprise treatment was one that used to be an expensive and elaborate process. Now it is common practice and this week I was able to get injections to help my TMJ too.(I honestly don't know what TMJ stands for- I call it terrible mouth joint!) Without even getting undressed, while the nurse distracted my babe, I was given over a dozen Botox injections. Hopefully, these injections at the trigger points will hold off all migraines for the next three months. The best Valentine possible.

The Botox leaves my forehead perfect and smooth. It will take a few days to take effect and I have a migraine until then. I love the irony that I get to look great while I am in pain. As I wait for it to work I will try to stay as peaceful as possible. If you read the classification Botox is a neurotoxin. I'm excited because my doctor injected a neurotoxin in the base of my skull. Pain makes us do desperate things.

We did have a lovely Valentines Day. This time of year many mental health problems rear and we have been spared. Instead our evening was truly perfect. As I put my roses in a vase, I whispered to my husband that we were making things difficult for whoever dates our daughters.

I hope this post finds everyone warm and well.

CVW your Valentine is in my car❤
Cheers,
ALJ

Valentines!💝❤

When I pulled out my Valentine card supply box from last year, I found a few stragglers we forgot to deliver. Checking the names on the left over cards did explain why some relationships were not as warm as I expected them to be this past year.

It was an omen.

I need to be better at reading signs. My older daughter is in Middle School and I could easily go this year without putting up up anything with a heart on it or noticing the seasonal decorations for February. Now my home is starting to show signs of a stationary store or a toddler classroom as I decorate to relieve the gray sky of winter out our windows.

My tradition of giving out little gifts and reminding people as often as possible how much I loved them began in my early teens with the death of a friend. When I learned suicide number rise at Valentines, I decided in my young mind that I could help the people I saw that day. So I carried a bag of candy. That was twenty years ago. Now I send some, and have a few choice clothing items to pull out. Mostly, I love chocolate and making people feel loved.

In my family 2012 was the year of new cousins so I set out to send everyone a Valentine. The new bad dog had other ideas. My oldest and I spent a productive weekend morning wrapping little gifts for her cousins and labeling bags to put into boxes ready for the mail. Our towers of addressed shipping boxes was impressive as we headed of to a party and waited for Monday.

He ate through the heavy packing material, a printed layer of valentine plastic, some tissue, and cardboard all to eat those silly conversation hearts. Our bad dog ate the Valentines. After my initial flurry of shopping, organizing, wrapping and packing I don't know if I have another round in me. Sadly, the kids I was sending gifts to are too little to use phones so I can't text or send an e-card.

When the baby knocks over her block tower, we build it again. In professional life I would try and problem solve around a puzzle until it was complete. In cold days of limited energy, my glitter and hearts have been defeated by a bad dog. This small defeat may be the difference between high functioning and not coping well with chronic pain. I'll leave a post script in the comments about the ultimate results.

On the dog behavior there is good new. We received a dog tax bill in the mail for a "Poppit" so we started calling our our new dog by his old name. We have been calling him half a dozen other things, my favorite being"Snarky" or Evil Eyes. Now he comes when you call. If you call an old dog by several new names he just gets confused and belligerent.

Still, he ate the Valentines.

Maybe next year.

I need more tea.

Cheers,
ALJ 💝❤🎁

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.

Cheers,
Anna-Lisa

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,

Cheers,

ALJ

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.

Cheers,
ALJ

The Darkest Day: Why We Have a Tree Inside

Every year I volunteer to teach a holiday class, bring in treats and make a craft with my daughters class. When my daughter was in pre-school and Kindergarten, the teacher planned a holiday party and all the parents came to school. Back then I volunteered to bring in whatever the teacher asked. My daughter was born in Washington, DC and her small class on Capitol Hill was a little model UN: she had friends who had been to Israel and celebrated Hanuka, African friends who shared Kwanza traditions and the rest of us who just had trees. As she got older, other Mothers went back to work and I kept coming to school as a volunteer every holiday. Now my daughter is in her first year of Middle School and her Social Studies teacher invited me to come and teach a class that is a combination of comparative religion, cultural anthropology and here in North Carolina, a little bit of local pride.

My family is Swedish. As a child my parents put traditional candles on our Christmas tree and my father would tease that as the oldest daughter I had to wear the Saint Lucia crown of greenery with candles on Christmas Eve. We had a Scandinavian brass angel chime that is a small windmill powered by candles that move golden angels in a circle to strike bells. As the candles burn hotter the angels spin faster and make a light magical sound as they ring the little bell. Looking at my angel chimes and candles I realize that these could have been made as long as 3000 years ago by simple metal tinsmith and we know that we have always had fire to light our way in the dark.

My lesson  I tell children is that the whole world celebrates the end of the darkest day by exchanging gifts and lighting candles.

For a Myalgia Mommies many mornings can feel like the beginning of another dark day. As I decorate the house with another tree, I'm up to five, I try not to think of the work it will take to put everything away when the season is over. Much like the seasons, I know that each day will pass and the light will come again.

Instead I think about my ancestors thousands of years ago. A mother in a small house, waiting out two months of darkness (I can't imagine spending two months in darkness with my family, I prefer the equator where it is always warm and sunny!) surrounded by children and extended family. Bringing in a fresh scented pine tree was a stroke of pure genius. I ask the children if they ever go to a car wash...whoever is the first to point out that car air fresheners are all tree shaped is rewarded with a piece of chocolate. The kids and I laugh at the idea of the smell of a little cottage filled with family and pets, no running water in the days before people believed in regular bathing or had washing machines. Bringing a fragrant tree into that home was inspired.

Last year my Grandmother-in-law passed away this time of year. When I first became sick she was hostile to the idea. She would ask pointed questions like "what would a woman in Africa do if she had this disease?" Thinking about the holidays and lighting trees in darkness, I think I would have been the Mother in the corner living much like the others, sometimes relying on a little more help from my family. When the tree came in for the dark winter months, I would try to make them all something nice to thank them for their help throughout the year. To show the kids how timeless crafts are I brought in an ornament made from straw, one of wood and a hand knit stocking. So they also understood how time in the house and too much crafting can lead to some silly ideas, the stocking I brought in has a lovely white design. It was made but a relative who collected her dog fur, spun it into the softest yarn, and knit booties for my daughter.

My father loves to tell the story of a friend who had the hair from his dog knitted into a sweater. They were on a ski lift together in a light snow. Wet dog smells bad even in sweater form.  Like seeking light in the dark, some things are universal.

We make ornaments every year to celebrate that we are about to survive another darkest day. That's a lie. I buy ornaments every year. Pretty glass ornaments made by someone else. In theory I should have close to fifty ornaments by now since I have had a tree with my husband for almost fifteen years and we get our daughter one for each of her twelve years. Did I mention the part about the ornaments being glass? Maybe I should start making some tonight, and back date them. Instead, while we sit around the fire at night I am sending cards to loved ones far and wide. Lighting candles and saying prayers as I think of those whose day is much darker than my own.

My husband lived in India as a child. The India festival of light is Diwali and took place in November. They use a different calendar that I have yet to understand. On Facebook I always forward the wonderful photo of India from space on Diwali where the entire country glitters from the light of millions of candles. I'm sure all of the East Coast is lit brightly with candles and lights tonight.

I still haven't thought of a gift to make. My craft bin is full of potential projects but my ideas are not pouring forth. Finding an object to represent appreciation, affection, gratitude and love is a daunting task. As time runs out before the holiday, I still have more cards to send.

Maybe I will make everyone a candle. I know how to do it, but understand that the process is a messy one. I'm also nervous around candles, I won't say who, but a family member did burn down her bedroom leaving a candle unattended. It wasn't me.

In a few weeks the winter solstice will come and go again. As we have a thousand times before, we will witness the dawn on a new day and know that the darkest day is behind us.

Until then, I used up my energy explaining the universal connection of the season to two classes of 6th graders. Then to empower them and bring the story full circle, I asked if they saw the White House Christmas Tree. It is from North Carolina. I sent them off to their next class with a candy cane, understanding of why they have a tree in their house and a back-up career plan. It turns out that tree farming is a lucrative local industry.

Once again, it's time for more tea.

Cheers.
ALJ

A Gift For Newtown

Since the tragic events of last Friday occurred they have been heavy on my mind and heart.

In other social media forums I have re-posted the blog "I Am Adam Lanza's Mother" from The Huffington Post, The Treatment Advocacy Center, and a group I contribute to: Mental Illness Policy. It is written from the perspective of a mother with a mentally ill child. On my other blog I have a small mental health private case management and consulting company. I have been working with special needs children since I was in high school. I practiced Special Education and Child Advocacy Law for three years and have known many sick children. Before my daughter was born, when I was still a law student, I lost my mother to mental illness and co-authored "I'm Not Sick, I Don't need Help: Helping the Seriously Mentally Ill Accept Treatment." (Vida Press, 2000)

My other blog is my name.

Newtown, CT is a short drive from where my Grandmother lives. On Facebook a neighbor and the mother of one of my daughters friends posted that one of her childhood friends lives in Newtown. She lost her child on Friday. Today I am going to put together a card for the mother and a small gift for her surviving son.

A different neighbor, also a Myalgia Mommie, who suffers from migraines and has a daughter a few months older than mine grew up in Newtown. She and her family haven't been able to watch the news all weekend. She is coming by this afternoon for tea and together we will craft something special.

When I first heard the news I was reminded of the year that my daughter was in Kindergarten in Washington, DC. It was 2005 and a mentally ill man shot and killed two Capitol Police Guards at one of the Senate buildings. My daughters school was two blocks from the Capitol and was immediately put in lock down while the police secured the area.

I spent a wonderful afternoon with my daughter and her classmates. The teachers kept the children calm and I still send cards to all of them. When I heard that some teachers hid the children to protect them, I knew that my daughters elementary teachers would have done the same. This time of year trying to think of the right gift for teachers is always a challenge, knowing teachers as friends, I have been with them when they get to sort through their holiday loot so I want my gift to be one they like.

To Newtown I will send a card and a journal. My daughter has been chatting up a storm about what happened and since she turned seven (the magic age of reason for children) she tells me what she is thinking. Under the age of seven I had a wonderful time weaving stories of a magical reality for her and now she is making a world of her own. If I ever get concerned about the direction her world is taking, I read her latest story. So to the children that are trying to get back into a routine in Newton, the best gift would be art supplies and a journal. Whenever I see cute journals on sale I pick up a few and keep them hidden in my gift drawer.

I'm also lighting candles.

Yesterday a journalist that I like was missing in Syria. Lighting a candle is a form of prayer that I learned growing up Catholic. When I married my Indian husband I converted to Hinduism and lighting candles is how you pray in Eastern religions too.

Last night I wasn't feeling well and laying in bed I thought about the centuries of lighting candles to light the way home from the darkness. It is the season of light.

I'm lighting candles all over my house. Prayers for everyone.

Blessing for a warm and loving holiday.

It's time for another cup of tea.

Cheers,
ALJ

My Magic Number of Cards

Today is 12.1.2.12.

This year the prediction for the Apocalypse comes from the Mayan Calendar and the date is set for the first day of Winter, I'm planning a party. Until then, I'm almost finished with my annual project of holiday cards. I can't say when this began, my daughters will always remember signing cards, much like I do.

We started sending family cards the year we were married. Now I send slightly more cards than I did wedding invitations. I think my holiday traditions are getting out of hand. My older daughter created lovely photo cards on the computer and I used a coupon sent by another Myalgia Mommy on Facebook. Ten cards were free and shipping was free.

This year has been an entertaining process. I misplaced my address book during our move.

I've been cold calling family and friends that haven't heard from me in years or only hear from me if there is a problem. It's an interesting reflection how many times I have said "really, we are all fine, I just need your address!"

One wonderful conversation I had was with my Uncle.

One teen summer I spent with him,  he sent me to sailing camp where I started collecting colored books with official certifications: CPR, lifeguard, red cross, whatever the YMCA camp offered a course in that I was old enough to take.

Eventually I almost followed my Grandmother, the public health nurse, when I obtained a Masters in Public Health. As I have previously mentioned, and the name Myalgia Mommies gives away, I am not able to pass the physical requirements to hold a first responder card anymore. I still do carry most of the supplies. Those of you who follow me on Facebook or Twitter know that for our new car, I now drive a police interceptor model so I have all the equipment to play along. I'm teasing my daughter that I am kinda a second responder.

That is the magic number of holiday cards that we send out. A few more than we would invite to our wedding and about the number that a first responder is responsible for.

I hope you get at least one card in the mail and it makes you smile. One of the many jobs I had to pay my way through college was that I was the mail clerk. I will never forget how happy a real letter or card in the mail made a homesick college freshman. As a mentor and Junior Resident Advisor my Sophmore year, I sometimes made notes and put them in people's boxes when they were having a bad week. In some ways I've always been a mom.

That's so touching I'm going to reward myself with tea and chocolate before I go look up more addresses on the internet. If I call you, I promise, the address book is probably in the box I am using as my nightstand. With the rest of my office supplies.

Happy Holidays.

Cheers,
ALJ

The Desk

This is my workspace.

Cards are on the agenda. I'm almost done!

I love my little tree. So do the cats.

Waiting for a Miracle

Yesterday I was bedridden from a bad flare. Fortunately, my husband didn't have a work conflict and was able to take the morning off to take care of our baby daughter.

After a decade of living with my chronic illness, I can usually predict a bad day and at least understand why my body is in revolt and agony. This one came at me from out of the blue. With the unseasonably warm and gorgeous weather we have been having, I can rule out that cause and it seems to be truly out of the blue.

This time of year with the holidays approaching, shopping trips to be done and all kinds of stress, there could be many ways that I would have over-extended myself. I haven't gotten started on anything. The holiday decorations are still in boxes, I haven't gotten a tree yet, if anything the pressure of my growing to-do list is the only stress I have. Even as I write both my legs are in agony. What is bothering me more than the pain, which I have grown accustomed to, is that there is nothing I can do except wait it out.

I've made the next available appointment with my neurologist. When I go into the pain clinic I will fill out the paperwork to indicate my recent treatment. On the form are boxes for what "alternative" treatments I have tried. I usually get to check all the boxes. Over the years I have tried everything. My diet is mostly organic, local, and over thought to absurdity. Once, I went gluten free for several weeks to see if I was part of a small percent for whom gluten triggered Fibromyalgia pain. In retrospect, it's a funny story. If you remove gluten from my diet I become incredibly hostile. It was PMS except worse for weeks, I would go into the kitchen, rummage through the cupboards pick up rice crackers and yell at my poor spouse about how much I hated anything made out of rice. My husband is half Indian and loves rice. It was a long, difficult month for him. Now we always keep cookies made from flour as part of our emergency rations.

For supplements I take calcium/magnesium to prevent migraines, vitamin D for a deficiency, prenatal out of habit, and B vitamins. When I have the occasional beer I make a bizarre version of a shandy: half beer and half lemon lime B vitamin fizzy drink. I think it's yummy. So I definately get to check the box that I take supplements to try and prevent my chronic pain.

I use wonderful buckwheat filled velvet things that I microwave to apply heat therapy. Sometimes they help to allieviate muscle pain, when they don't I stay nice and toasty. To make one at home, fill an old sock with rice then microwave. (a physical therapist told me that trick!)

This month I haven't tried any acupuncture. In part because it's the end of the year and my medical savings account ran out months ago. Also, I have found that for both massage and acupuncture the relief I get only lasts for hours not days. So while it is nice, I am often frustrated by it because if I drive to the appointment, by the time I get home, sometimes I will be back in the same condition as when I left the house.

During the years when fibromyalgia was still unrecognized by many doctors (I will never forget when Lyrica came out and a few friends called me to let me know that my disease had been cured because they saw an ad on television, bless them!) friends and family would share wonderful strange advice that they picked up from who-knows-where. My favorite example of this came from my step-mother-in-law. She is a public school teacher and had a colleague with Fibromyalgia. One evening after dinner she again told me I wasn't getting better because I didn't want to be better and described how the teacher she knew was getting great results eating a special ancient soup. In college a friend who was always trying the latest diet craze made me try the "cabbage soup" diet with her. We made a huge pot of vegetable soup which made her apartment smell like what I imagine old Russian women smell like, it tasted awful. The concept of the diet was that you could eat all the cabbage soup you wanted for two weeks and you would lose weight. I couldn't eat it for one meal. I think my friend held on for about four days. A few months after my step-mother-in-law told me about the miracle soup she reported that her friend had left school on medical leave. The soup didn't work for chronic pain either.

Deep down inside is a part of me that hopes that there is something that I have overlooked. Some simple obvious aspect of life that I could change that would make me better. Since I was diagnosed over a decade ago I have changed so many aspects of my personality. I've embraced a mindful, peaceful way of life. Slowed down in every aspect and learned to take each moment as a gift. I see beauty in small things and appreciate moments that I took for granted. Oddly enough I think I am happier now than I ever have been. I'm still checking the comments of this blog each day. If one of you have the recipe for magic soup, please share it. My cooking skills are not brilliant, but I can make soup, and I know all the Myalgia Mommies would also appreciate a good recipe. If it comes in the form of miracle cookies, with flour that would be perfect!

Until then, I'm going to take a nap. This afternoon I hope to get a Christmas tree with my girls and the miracle I'm looking for will be that my cats and baby don't break any of the ornaments I hang from it.

Happy Holidays,
ALJ