Sunday, November 10, 2013

Veterans Day Thank You

On Veterans Day I'm being grateful for the Veterans in my life and thinking of the recent Veterans of the Iraq and Afghanistan Wars. 

Thank you. Everyday. 

It's Veterans Day Weekend and I'm thinking of the chronic pains suffered throughout the military families that I know. 

I'm really grateful. 

Happy Veterans Day. 


Thursday, November 7, 2013

Superheroes, supershopping and Superfoods

My daughters were superheroes for Halloween. 

The baby was Super Meme and had been practicing her hero leaps for the month of October. She must have over heard her sister and I talking about costumes (being 2 she is very impressionable). My tween and her middle school friend were matching superheroes so she could have eavesdropped on them. The friends high school sister and her friends were superheroes too, so all ages here were in on the conspiracy. (As were the major retailers!) I scrambled to find a costume fitting the role of Super Mom and wondered if writing this blog disqualified me. 

On twitter I joked that feminism has succeeded. (I hope it has, but as I get older I realize the word has so much baggage it will take another generation!)

My fall hobby is to conduct alumni interviews for my superlative alma mater and the young people I meet are all superheroes. They are high achievers with bright futures ahead of them and are fun to meet. I find myself wanting to hang out with thier parents or ask them to mentor my daughter. It is a positive experience that fills me with hope for the future, and ideas of activities for my kids. I find that I can't pass judgement on these wonderful younge people and am writing this blog now when I should be completing the reports from my interviews. The entire process has led me to understand the basis of my greater writers block: whatever you put in writing becomes permanent. 

My super girls are thriving. The little one deleted the first draft of this blog and used my iPad to order $352 worth of random things from my favorite shopping app. I am conflicted over whether to be proud of her ability to use these devices that intimidate me or ashamed that I am letting my two year old play on evil screens. 

When I called to have the order deleted the woman was not at all surprised when I said my toddler had placed the order. She was impressed by the number and specificity of items. The baby has excellent taste.
My older daughter plays on the Internet too and brought me the magic tablet with a screen opened to what looked like a Fibromyalgia support or advocacy page but upon closer scrutiny was selling some secret formula supplements that promised to help provide more energy and improve quality of life. 

I don't know what ads get placed around this blog so for all I know she could have found it in the margins here or in a site I  recommended. 

My initial reaction was to say "Thank you, but I don't think these will work." 
I think it was the wrong answer. My next answer was to tell her that I already took the best vitamins medically recommended and would stick with those but I'm lucky that I had a doctor who did all the reading to tell me which handful of vitamins to take. By this point she had walked away. 

So I turned to my husband and realizing that the teachable moment was lost, allowed myself to succumb to neurosis. 

I asked in my most accusatory tone "have I said anything lately?" Then added some positive "I've been doing great!" This has the added advantage of being true! Recently I've been experiencing pretty stable health for me, so I have no idea what prompted my daughter to find the ad for a fibro site that promised me energy. Bitterly, I said that if there was a pill that worked for pain relief and better sleep, we would all know about it and someone would be fabulously wealthy. 

There was a time years ago when I scoured the Internet looking for answers and was willing to try anything I found thinking that there was a better answer out there than what the doctors could tell me. These days I live in a state of resignation where I am confident that I am doing the best I can given what is known about my illnesses. I would even go so far as to say I think I am an expert in living gracefully around chronic pain and enjoying life. 

On a constructive note, I did realize how fortunate I have been to have a doctor who combines both Western medicine and vitamin supplements. A large part of my health is from my steady diet of multiple daily superfoods I learned from my doctor, books, friends (who had degrees in nutrition) and experience. 

There is a list of foods that have a higher concentrate of vitamins and minerals than others. The superfoods include: 

Brown Rice
Sweet Potatoes
Red Wine

Those are the really easy ones and if you google "superfoods" there are multiple lists. 

When I remember to eat well I feel much better. Finding the right balance for me took time and continued effort. The first thing I end up having a deep talk with other Myalgia Mommies about is diet, what you eat is a huge part of how you feel. It's also something that you can change about your life. Trying to get my kids to eat a balanced diet is a daily struggle. 

I have been very impressed by some spinach brownie served by another SuperMom. She even made them in a crockpot! So there are more tricks to learn and I won't complain. 

For Halloween I ended up wearing a Cat Woman t-shirt. My SuperMom costume (I was going to wear my vintage MomsRising t-shirt) was in the laundry! 

Maybe next year. 



Thursday, October 10, 2013


If you hear a rumor that I have bird bone disease, it's just the kids. I made that one up. 

I broke a bone in my foot. Getting out of my car. Weeks ago. I have known this since I wrote my last blog and am now wearing a boot of shame.

For the first few weeks that I had the stress fracture in my foot I did not seek medical attention. My foot hurt, walking hurt and the pain radiated up my body. I thought I was having a bad flare with a hurt foot. In the back of my mind part of me was convinced that there was something very wrong with my foot but I was in pain and thought I might be overreacting. A decade of chronic pain has taught me to listen to my body, then tune out the noise and try to get on with life.

My first solution to the pain in my foot was to try and buy new shoes. I am still stuck in the phase of personal evolution where I hope shopping can help problems. Once a year my daughter and I are enthralled by the new school supplies and believe that we will achieve a state of perfect, color coordinated organization if only we choose the right binder and desk accessories. Since I broke my foot the week before school started I knew that if I found a pair of tennis shoes (I prefer to go barefoot and have spent the last year in ballet flats with no support even when on walks) that the correct cushioning would provide relief. 

I have been looking for a new pair of tennis shoes since my last pair gave out during my pregnancy. On a few quick trips to the sporting goods store to buy equipment or shoes for the tween I've tried to find some for myself but they were always way too bright. Once I found a pair I liked that fit and my daughter quipped that her best friend had the same pair. I can't dress like the Tweens. Also, she wanted the same pair and I couldn't buy myself the status shoes my child wanted. It just seemed wrong. 

In a row of neon shoes, I tried to find something timeless and mature. My daughter told me anything gray was for old people. I told her anything fluorescent was for the young. There was a pair of all black. I bought them to prove a point. My foot still hurt. Also, I look like a ninja. 

(I have since been told that my black ninja shoes look like "Amish sneakers") 

Later that week my daughter hurt her hand in tennis and the pediatrician sent us to the walk in orthopedic clinic for an x-ray. While we waited for results (she needed a smaller grip raquet) I thought "I should have them X-ray my foot, I know it's broken" but then we would never have gotten out of that clinic. 

Instead I waited another week, complaining on twitter, not taking my morning walk, skulking around the house and feeling wretched as the hurt foot triggered a flare and a headache. 

The episode of explaining my chronic pain disorder, that I waited so long for a boot and x-ray and that I wasn't seeking any pain meds is a blog that has already been written and isn't that interesting. Nurses are amazing. 

Now I have a black boot and compression baths. Specific instructions to try to stay off my foot and I realized that if you go out and about in public with a broken foot you need a better reason than falling out of your parked truck while barefoot. 

I know someone who finished an Ironman triathlon with a broken foot. I'm not complaining. I just need a better story for how I broke mine. 

Particarlarly for the queries from young people. If I expect the growing minds to be thinking expansively then I want to give them a more creative answer to how I broke my foot:

Sky Diving.

Rock climbing. 

Saving the world. 

Having a broken foot and a toddler is not condusive to getting many things done. We have produced a prodigious amount of new artwork during our home period and I am in the process of mailing it out. 

We are making Halloween Decorations. 

Also, I don't have to go to the grocery store. So really, life is pretty good. 


Tuesday, August 6, 2013

Of Bone Grafts and Crafts

In previous posts and on twitter I mention that I write my blogs on my smartphone. It has been a long difficult summer of bone grafts and crafts and I have tried to share it with you in many draft forms on my infernal device.

My writing time is when the baby is asleep. I begin a blog, sitting on the patio (my office) while the baby naps or late at night. I thought my drafts were saving and that I would go back and post them for you. The baby loves my phone. They were deleted.

Instead I find my phone, or wrestle it from her, to discover that apps have been arraigned or deleted and the baby has taken dozens of photos of her feet, the floor, the lamp or whatever she sees. At first I found these photos delightful and looked at each one. I told my husband that we should save them or print them to share with the world the perspective and genius of our toddler. Now I delete them. If you think an exhibit of toddler photography would be a fabulous idea, let me know.

I lost the month of June being the Craft Mom for camp. It was an interesting experience and I tried to write about it many ways. Ultimately I realized what happens at camp stays at camp and I was allowed a glimpse into the world of little girls that reminded me of the stories of fairies, I'm still recovering. More about that later, in a novella. 

Camp gave me a chance to stay with my twelve year old and focus entirely on her for a few days. I tried to run the craft room and with the help of a small pharmacy and one migraine shot made it through the week as active and cheerful as the other mothers. It did take me a week in bed to recover but it was worth it and I got a t-shirt. 

Before camp I cancelled a dentist appointment to fill a cavity. I have a deep childhood phobia of the dentist from an experience of having teeth removed and the pain and migraines that followed at age 7. The spaces two of these teeth where removed did not have adult molars grow in. I just fear the dentist. 

The cavity had gone to the root and on July 5, I met with an oral surgeon to schedule having the tooth removed. He explained why I also needed two bone grafts in my jaw. I had the weekend to think about it. 

I couldn't have asked for better resources. (Including a wonderful new friend I met at camp, it was a lovely moment to make a new friend at camp, an experience I had not expected to have at this moment in my life) 

Then there is the Internet, friends who know someone, and useless advice I got. 

I went into the surgery unsure of my decision. It felt rushed and wrong. I didn't  want cadaver bone packed into my jaw. There was an option uncovered by insurance to add a growth material to the cadaver bone, I joked that I wanted to wait until we had the stem cell technology to regrow bone and had saved the babies cord blood at The University if that would help. It didn't. My jaw was sliced open on both the top and bottom and packed with hundreds of bone fragments. 

Since I had enough prescriptions the doctor didn't feel the need to talk about how to take pain medicine after surgery. 

The visit was short so I didn't feel the need to tell the surgeon my complete medical history. I haven't even shared it on this blog. I like to forget large chunks of it, I feel better in the mornings. 

Previously I had a longer consult with someone else in the practice who had seen patients with fibromyalgia and migraines who recovered well from the grafts and dental implants. 

I didn't fare as well. 

The implant in my upper right jaw triggered a nerve pain throughout my face. After the surgery it felt as though pain was radiating throughout my entire face, the delicate bones of my face ached and the soft tissue covering them where in spasm. Each morning was resigned to agony to open my eyes. For three weeks I needed to take medication to see through the pain and even then was only barely human. Both jaws hurt (and still do) from old TMJ on one side and a new case on the other. 

The pain was miserable but the loneliness was worse. It made sense to my neurologist that the pain would be a result of the bone graft. She expected a longer surgical and general recovery from someone with my medical history, and was surprised I done the procedure in the first place. While to her I admitted that I was shocked and appalled at how much pain the routine procedure had triggered, I began to play it down or avoid others. 

My daughter was getting ready for the National Chapionships for her favorite activity and instead of helping her prepare I was barely able to stay awake. For a few days my husband could excuse me as having dental surgery, but as one week turned to two and a third, I was embarrassed to have the other parents know how sick I am. In this group of triathlon running super moms, who work full time, (I have seen them high functioning with a cold that would put me in bed) I already feel like a weak slacker. Somehow I didn't want to know how they would respond knowing I was taken out for a month by an operation that elderly relations recover from in a few days (reportedly, several times, in a not helpful way as I suffered through my side effects.)

The intense and debilitating pain, combined with the effects of narcotic pain medicine made parenting through July nearly impossible. My husband used some medical leave to stay home in the days immediately following my surgery and my older daughter helped with the toddler. 

On my porch, calling family and oldest friends to update on my latest disaster the sympathy was hard to come by, this was a routine procedure and I had no explanation for my extreme response to it. In my neurologists office, my symptoms and complaints were received with a nod and no surprise, they seemed an obvious effect for someone with my collection of syndromes. I joked that if the research finally proves that the pain receptors of people like me are over-reactive, I will smile and nod. Those who love me most don't understand the disease I have and believe me to be malingering. 

So as I struggled through these complications, I didn't and couldn't reach out to the nascent community we have built in our new home. I knew they would not be able to understand that anyone could be so devastated by a routine procedure that by the follow-up appeared to have gone well. 

After years of living with this chronic pain I have come to find that it is something that can't be shared with friends and community without risking a kind of illness fatigue. People are willing to help out and make room for the occassional crisis, but when every week brings a different problem, you become the burden only family can bear. I joked to my daughter that I didn't want to talk about it or call anyone and ask for help because it made it too much work to be my friend. 

The bone graft drama is behind me and today I am updating the blog on the first day of school. 

I lost the summer to unforeseen complications and the blur of time passing too quickly. The next step for my teeth is reccommended dental implants. If any reader has had them and would like to inform my decision with a first hand account, I am grateful. 

That my girls are thriving and had a full summer despite my suffering, I am truly blessed. I hope you are as well.


Thursday, May 30, 2013

The MM Garden Delivers

This time last year I was moving into my current home and began what little gardening I do at the urging of CVW, the other original MM.

We were both limited by time and energy to the amount of gardening we were willing to do but urged each other into planting patio containers.

At my house the gardening spread around the patio and I had to create a criteria for what flowers I could plant. My baby ate everything. My options were a summer of panic and poison control or an all edible flower garden. We have marigolds.

I also grow a few kitchen herbs and really whatever strikes our fancy (and is edible, we have pets too) when we are at the garden store.

Compared to real gardeners, I am somewhere below a beginner. However, my gardening gives me some relaxing time and a small hobby so I'm claiming it. I cherish my small collection of pots.

It's already warming up and the garden has given me a great gift: water.

I don't like to drink water.

I pretend that I really enjoy it and have been trying to convince myself that nothing is as refreshing as a cool glass of water for years. I prefer coffee.

In the summer my body needs water, we all do, without any harmful additives or extra sugar. So do the kids.

A yoga instructor posted on Facebook that she was ready for a heat wave with herb infused water from her garden. Inspired, I looked around the patio and found mint.

It works!

Since there are few new ideas, if you search "mint infused water" there are recipes, photos and even a video.

Directions: pull some mint leaves off the plant. Put the mint in a pitcher of water. Leave in fridge overnight.

This summer I'm drinking more water, as long as the mint holds up. At least I will try to because I know when headaches come the first question you ask is if you have been drinking enough water.

As I Mom and a migraine sufferer, I know they are dehydrated and I will usually have to think about my answer.

So here's a minty toast wishing you a healthy, hydrated summer. If you have a favorite easy thing to add to water please share in the comments.


Thursday, May 9, 2013

Hiding in the Bathroom

Last night I had a mello dramatic confrontation with my tween and a brilliant new idea.

My husband was working late and I found myself seated across from two girls over my usual first dinner of the night of cheese pasta and dark, you-will-eat-it, steamed, veggies. The baby and I noticed that my daughter asked to go to the bathroom twice during dinner and seemed to be eating quickly.

I asked her if she felt alright. Concerned, I remembered that she said her head hurt when she came home. She said she was fine. Seemed normal. In fact my daughter had a sparkle in her eye.

As soon as she finished eating and cleared her plate I asked her to do something and she replied that she needed to go use the bathroom first.

A few minutes later even the baby was suspicious.

We knocked on the bathroom door to find her playing on Instagram with her friends.

She told me that some of her friends moms go in the bathroom to use the phone all the time. They talk about it at school.

She lost her phone rights for a few days.

I may have gained a sanctuary. (Also wish these other moms had shared this tip.)

One of the characteristics of Mothers I have known is not knowing how to ask for help. Or take a moment for themselves.

As a mother with a pain disorder if I don't find a way to prioritize some self care I won't be able to care for them. I need to own this and take time, not have to hide in the bathroom.

I just need to find more time.

I may be writing this blog from my bathroom floor.


Tuesday, April 30, 2013

The Happy Fun Sick Person

Last week I was hit by a rogue flare and couldn't move from my chair.

I feel obligated to be a happy fun sick person. I don't want my daughter to grow up and have memories of her mother the wilting invalid always complaining and talking about her latest symptom.

Also, as I spend time with more mothers I find that it is not just me with a headache and some of us are stronger than others. (Also some do more for their kids than others).

So when I have days where I am melting into my chair I find ways to be happy and fun for my girls. This chronic illness can't color their childhoods anything but richer because they had my fuller attention.

Today is misty and rainy and that happy fun way is going to include Fairies.

Last week the birdhouse we built a year ago fell off the tree. The glue had worn away. I'm up cycling it into a Fairy house with the baby later today. Or so goes my ambition. I know I'm not leaving the house until the afternoon riding lesson. If I conserve my energy for one big push we can take my tween out to ride her pony and the baby and I will walk around the farm. We can also unload the 30 ft of pine shavings that I'm driving around with. I feel like I'm in the horse mafia. I have enough pine shavings to make a fort!

At the feed store this morning I initially bought three bushels of pine, Ms. Daisy, my retired K-9 police car has an amazing trunk and is filled with a stroller and six bushels of pine shavings with room to spare. If police departments have to sell old cars to raise money, at least they make great family vehicles. Also, all the guys were impressed by the rims. I have no idea why, since they are black and not shiny.

Also, I bought myself a plant. Gardening is a hobby I reserve for myself that everyone appreciates having around them. At some point today, or maybe this evening, I'll pot my plant and watch it bloom, while I smile and encourage and gather strength to be the happy fun Mom who is not going to complain about her symptoms.

Tuesday, April 9, 2013

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!

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.  

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!

Friday, March 29, 2013

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.


Tuesday, March 19, 2013

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.


Monday, February 25, 2013

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.


Friday, February 22, 2013

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.


Friday, February 15, 2013

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❤

Tuesday, February 5, 2013


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.

ALJ 💝❤🎁

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 ( 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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