Gift from a reader: Sugar Spa Day at Home!

Editors Note: The following recipe was sent to Myalgia Mommies by Michelle Pino. She suggested that we might enjoy a simple, all natural spa treatment that we could make and use at home. 

My tween daughter made a version of a sugar scrub at a sleepover and I'm excited to try it. The all natural scrub was her "Peace offering" after she brought home some body spray she bought with friends at the mall and I made her leave it on the porch. Many bath and beauty products contain chemicals that trigger headaches for me. Among Myalgia Mommies I meet I find this to be a shared experience. I know some days finding time for a shower is a struggle, but when you do, here is a little tip to glam up your day!

Dull, Dry Winter Skin Got You Down?

Get Spring Ready Skin with This Simple DIY Body Scrub

Don’t you just love seeing the grass turn green, watching flowers blossom and the feel of the sun shining down on you? Sunshine is a rare thing during the winter months here in Central New York, but there’s plenty of it to look forward to come spring and summer. While spring brings all the things we love, one thing most people don’t look forward to is revealing the dull, dry skin winter has covered up.

This time of year, dry skin is a major focus of treatments at our spa in Central New York. We use a combination of natural ingredients, including organic products and fresh herbs to treat wintered skin. Fortunately, you can find many of the same ingredients we use at the spa right in your own home, or with a quick trip to your local grocery store!

This easy, inexpensive DIY body scrub is the perfect way to prep for the tank tops, sundresses and flip-flops of spring in the comfort of your own home! You can find all of these items in the baking section of your local grocery store.  

Ingredients:

1 c. White Granulated Sugar

½ c. Almond Oil

4-6 drops Lavander Essential Oil

Place the sugar in a mixing bowl and slowly add almond oil. Use a metal spoon to blend the ingredients to produce an even textured scrub. Break up any large clumps you see. You can use less or more of the oil, just make sure your scrub is not too soupy and avoid dissolving the sugar granuals.  

Apply the scrub to warm, clean skin in the shower. Use your hands to massage it in using circular motions. Rinse off with warm water and pat yourself dry with a soft, clean towel. I don’t recommend using this scrub on your face because it may be too coarse.

And that's it! You have beautiful spring ready skin in two simple steps!

Sugar scrubs are easy to make and you can use them any time of year! Experiment with different essential oils to get a scent that is perfect for you!

Madness and March Hares

As March began our living room slowly filled with rabbits and bunnies from Easter (Spring Equinox Celebrations) past and as I plan this years celebration I am feeling "Mad as a March Hare."

Every year I think Easter comes early and I either start to decorate for the holiday too soon or wait and end up frantically making plans at the last minute. This year I noticed that it was at the end of the month and I am trying to act accordingly.

My level of decorations is generally subdued and I think tasteful. This generous opinion is held only by me, most others find my decor to be childish and cluttering. The combination of my lifestyle as a mother and needing to rest and limit some activity around my illness means I spend a good deal of time in my house.

The recent cold front has kept me in pain (previous posts have covered the link between the weather and chronic pain) and indoors, so I have been contemplating my decorations and it's the only news I have!

My goal is to decorate to look engaging to the eye and mind. When I had an office I would decorate it with a rotating selection of small objects and always have fresh flowers. I discovered a new love for putting gel cling window decals up in our kitchen window for me and the baby.

Somehow these bright reminders that another fun Holiday and Spring are coming cheer us both up.

The most obvious and annoying of this round of rotating decorations is the March of Hares into the living room. We have a tradition that each family member is given a new stuffed bunny every year for Easter. Over the years, our daughter is 12, we have an amazing collection of stuffed "some bunnies." Now the bunnies are holding a meeting to entertain the toddler.

We have had fun remembering which bunnies were from which year, who has the matching bunny and where we were for the party.

In other stories we remember the lost bunny from a good year and the dog that ate him. (it was the perfect purple bunny!) Lost bunnies and some bunnies that we used to know are my favorite since I never have to dust them.

Fun with bunnies is that they occupy the guest chair. Some people sit on a pile of bunnies, others move them politely and some just toss them to the floor. How you treat the bunnies in the chair is a crude personality test so I am going to stop here.

Since the bunnies are already spilling over, I realize with my new daughter that I need more storage space or different family traditions.

Instead, I'll just keep buying bunnies and let them multiply.

The Hares are moving from every dusty corner of our house to prominent places.This goes way beyond just bunnies.

The truly mad and maddening hares are the collection of bunnies that I inherited from my husbands grandmother. She was a fascinating and captivating woman who collected only interesting rabbits for a few years. When people noticed and started giving her rabbits she grew bored of bunnies and gave some of them to me. She also warned me never to let people know you collect something or they will ruin it by trying to add to your collection.

So, no, I don't collect bunnies, they come to me.

I'm told that this is an unusually cold Spring. This weekend we will head South to a beach where I will be warm and happy. A few bunnies will come with us.

I hope however you celebrate the Spring Equinox there is a chance for rest.

Cheers,
ALJ

The Ides of March Madness

This morning when I came out of the shower I was delighted to find three things of deodorant on my vanity. The delight came from the fact that I've been looking everywhere for one for the past twenty-four hours. It was as if they materialized overnight.

My house isn't filled with fairies. The cold rain has kept me inside with a sick toddler who is recovered enough to wipe her nose on everything. Sadly, she's not quite well enough to risk exposure to other children. So we are playing at home.

I've cancelled our activities saying the baby is sick. The statement isn't accurate. The toddler is sick. When her fever breaks and she has an hour where she feels better this girl is fast! (Missing deodorant, one lives in our swim class bag, unpacked, one in overnight luggage, in closet, unpacked, the toddler is an evil elf. She also hides keys and throws away phones.)

My Father was visiting. He lives in Colorado, a very cold place that I can't visit comfortably during most of the year. He doesn't read blogs. He also doesn't have a smartphone which made me change my social media ways during his visit.

I put the phone down. My virtual world went silent. Life continued with a few less breaking news stories.

I did glance at twitter where I have my own special world. A friend of decades, who is a RN, forwarded an article about women with chronic health issues. I am going to find a way to link twitter to this blog later today.

The article is about how doctors don't treat women in pain or with any other chronic condition the same as men. It mentioned that many women never get a "real" diagnosis and instead are diagnosed with Fibromyalgia.

The story also described the disparity in women in research for new medications which is as old as research studies. I was saddened to see it printed again that Fibromyalgia is a diagnosis of last resort. To me it is a specific condition that I have lived with for a decade.

Once again I'm blogging from my phone and don't know how to link the article to the blog.

It made me realize that after a decade, nothing has changed in the world of women living with chronic pain. At the same time the existence of this blog means everything has changed because at least now the women with smartphones are complaining about it.

I will update and edit this post throughout the day. So if you come back and re-read this blog in a week it will have an article attached and be completely different.

After I have more tea.

Cheers,
ALJ

Too Early for Cake

The most important aspect to pain management in all chronic pain is sleep management.
****A blog about sleep deprivation, written by a really tired woman. Please lower expectations!!!****

Children are disruptive to sleep.

I think this is what separates Myalgia Mommies from other women who also suffer from chronic pain.

We added a dose of kids. So we aren't in control of "sleep management" our kids choose our sleep schedules. This weekend my toddler is treating us to a cold and waking up at 5am (instead of her usual 6:30, which is still pretty harsh) we are in boarding school or Guantanamo. I'm not sure yet. I do know this much coffee so early is not good for me and I am going to switch to yerba matte soon.

Yesterday I made a bundt cake. My older daughter decorated it and we came up with a wonderful litany of reasons to have a cake. I ate way too much and went to sleep with the baby having been up on a marathon of taking care of a sick family since 5 am. There is a special level of care taking that a mother gives. We add a dose of our own neurosis. I sit and pace, wondering if I can worry her symptoms into the deadly and rare variant of croup that kills children in the mountains of Eastern Europe.  She has a lingering common cold, but I am a creative and loving mother. Also, I apply menthol vapor rub with the perfect touch.

This morning the toddler starting demanding "Pie" or The Cake at 5:45 before we were able to make coffee. I've started a strange conversation on twitter at dawn.

My husband and I have never been morning people. When we met we we both law students. In Washington, DC in the late 90's we both went to Law School in the Evenings because we were having too much fun working as attorneys during the day. We put in 70 hour weeks and did not rise on the weekends until noon.

Both our daughters are those shiny, sunlight, bubbling creatures that alight with the dawn. I have no idea how this happened. The last decade has been a struggle and an evolution. Now we wake up early. Our girls outshine us in the mornings but we have coffee and catch up to them by 8ish. Comparing our situation to other parents, I think it is a common affliction.

None of this changes the fact that I am not in control of the sleep pattern my body wants this week.

So, I'm getting more coffee. Today we are having cake with second breakfast.

Cheers,
ALJ

Obnoxious Opiates and Toddler Issues

The story of any struggle with Myalgia must include some "laugh about it now" story about opiates. My own decade long saga includes several "Annadotes" that I try to tell in a funny way but if I'm not careful they come across as bitter or pathetic.

This week pain medications are on my mind because even though I am on "Mommy Leave" or disabled status I still read all the Centers for Disease Control press releases and the latest one is that deaths from overdose of opiate medication has risen for the 11th year in a row. When I read this and posted it to the Myalgia Mommies Facebook page, I felt a lump in my gut.

Anyone with a real chronic pain condition knows the frustration of meeting with a new doctor or seeking emergency treatment and wanting to scream "this is not drug seeking behavior!" For me, the last thing I want is pain medicine, it only makes you not care that you are in pain, it doesn't really ever make the pain entirely go away. At least it never has for me.

When I am seeking treatment it is always with the hope that there is a new drug or therapy that will address my specific condition and treat it, not just a pain medicine that will make me numb to the world.

As a Mother, I would never drink and drive. When I get a phone call while driving, I have my older daughter play personal assistant and answer for me. So I don't want to take any level of drugs that would endanger my most precious darlings. (I have driven with one eye closed due to a blinding migraine but I can still focus on the road.)

For years I have struggled to learn to take my opiates correctly. My neurologist has explained pain as a rising curve and told me to take the medicine when I feel the beginning of a bad flare. If you take the medicine when you are already in great pain it won't be effective. I invariably wait until it is too late. I only remember that I have narcotic pain medicine to take when I am in excruciating pain and by then it is "too late" and the medicine only takes the edge off.

Many years ago, the first time I took a daily slow release of OxyContin, a young family member had a friend who became an addict taking the same drug recreationally and ended up in rehab. I made the mistake back then of telling family members what medications I was taking. In those days my illness was new and I was looking to in laws for support. I only made that mistake once.

Under pressure from guilt I weaned off the opiate and the overwhelming pain and resulting time confined to my bed led to a horrible depression. Fortunately, I was under the care of excellent doctors who convinced me of the need to resume a course of treatment that included pain medication.

This week has been a lovely adventure. My 16 month old is a dare devil extraordinaire. She delights in climbing on the kitchen table and flinging herself into my arms. She choke holds and rides my poor cat. When my back and nerves are completely shot and I think I can't go on she tenderly hugs me and gives the sweetest kisses. She also sits on my back. This baby brings me her book, says "read it" and if I don't move fast enough hits me with the book. The pain of being hit with a book distracts me from my fibro flare.

In order to make it thru a bad I use two different muscle relaxants that I alternate in order to keep from forming a tolerance.  In my medicine cabinet I have an opiate pain medicine (Vicodin) that I intentionally ignore because I know that if I take if two days in a row, on the third day I will have a rebound headache from the drug. So I push it to the back of the cupboard and try everything else first.

I can only take oxycontin and dilauded because I have an allergic reaction to Morphine.  I learned this in a fun way that led to me ordering our living room furniture in white when my older daughter was a little over a year old. Fortunately the couch and matching chair had removable covers and my exploration of the different properties of cleaning products began.

I hope this news of abuse doesn't make it harder for us Myalgia Mommies to get the medication that we need. On a deeper level I hope with all my heart that there aren't women out there overwhelmed and in pain who ignore the dosing instructions and take too many pills. The pain medicine can help. It also kills.

The temptation to take extra pills thinking that they might work better or add more relief is easy to sympathize with, particularly for someone who is recently diagnosed. After my many years of trying to find a good mix of therapy, I understand the importance of keeping medication in reserve for when it is really needed. Our bodies build tolerances to everything. The rising death count reported by the CDC indicate that at a certain level the pain medicine is deadly. 

The moral of this story is try harder to go without or use less not more. Lying on the couch with my aromatherapy pillow over my eyes I am with my girls. Listening to them play and watch TV. I can breathe thru thru a bad day and be there for tomorrow. Please keep this in mind and always take less than needed not more.

If you read my other blog, The Silver Ribbon Campaign, you will learn that I lost my Mother to a brain disease. I dearly hope this blog can provide a Myalgia Mommy with the knowledge that you are not alone and thousands of other women also live with daily pain, and take pain medicine only as prescribed.

I write while my baby naps. My body also cries out for a nap in this cold weather and I need another cup of coffee and to bury myself under a blanket.

Cheers,
ALJ

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