My Cheeseburger

We all must be careful with the words we use. Words have power. Don't get me started on politics…It is also this permanence that kept me from writing.

Of all the aspects of my narrative to focus on, the fact that I’m doing it while I have a headache or am in pain is not what I want to highlight. It’s like the card that says “Ginger Rogers did it backwards and in heels…” I stopped writing this blog because I didn't want my definition of myself to include any diagnosis or conversation about my health. It is what it is.

I haven't updated the blog in two years because I have been quite undone…by a son.

He is amazing and the third child was the one that pushed us over the edge into constant chaos. We call him Cheeseburger. It was the only thing I craved while pregnant.…I was a vegetarian for years so there was particular irony when I heard the siren song of a burger.

As a third child he exceeded our population growth limit and I’ve been mindful and tried to use cloth diapers and as few resources as possible. So, I’ve legitimately been busy.

I told my neurologist that if you took the World Health Organization Disability Test and replaced the word “Disability” with “Children,” you get a pretty high score. At least I do. I’ve been overwhelmed by my children and recognize that I am blessed that the little monsters are healthy and bright enough to do so.

This blog continues to get readers despite my inactivity in part because I said that Myalgia Mommies are very different from Chronic Babes. (One of my favorite communities and is AMAZING!) To me Chronic Babe is a great resource for reminding you will get through this and be adorable.  This blog was meant as a place to go when you felt like "on top of all this pain I have to parent!" the goal is to be an entertaining distraction and as a reminder that you are not alone. My third pregnancy made me face exactly what it meant to be a mother knowing my limitations. I suffer from chronic daily headaches, fibromyalgia and anxiety. Children are triggers for all of these conditions. A child is a selfish, expensive decision (or blessing!) that alters the course of your life. They are also the source of pure magic.

I really wanted that cheeseburger.

I also feel like I need to stop mentioning that I have these chronic debilitating conditions because I am clearly still getting things done. Last weekend I went to a Mothers of Multiples tag sale. Those amazing women had multiple babies of the same age and were part of a volunteer club, they were all up, there and going through the motions.

There was a video that circulated the internet of the different kinds of moms on the playground: baby wearing mom, breast feeding mom, working moms, etc, I think if the Myalgia Mommies all had a secret nod we would be in a corner in sunglasses having quiet time. We could take turns watching the children like a pride of large cats.

That would be really cool.

I’ll look for you at the park.

Otherwise, it’s been a rough few months. I knew I was predisposed to a perinatal mood disorder or post-partum depression. It’s like a slow flood. You expect it, it comes, you deal with it, then you clean up after. I’ll blog about that separately. Also, I have three children.

I wish that every woman who suffers from postpartum depression can get the help and support that I did. In my case, I knew I was headed to a dark place: I learned of my pregnancy the same week that we put my father in hospice. He did not live to meet my son. Anyway…I keep promising myself that I am going to start writing again and this is a good first step.

Cheers,
ALJ

Blue Monday Dispatch

Blue Monday, the second Monday in January, is supposed to be the most depressing day of the year. I learned this from Facebook and Mental Health Foundation who offered great tips for coping. 

Depression and Chronic Pain inevitably go together. The pain wears you down, "why me" niggles at the back of your mind, and if you have to give up plans or activities it is a real loss. I have been living with depression as my little black dog for over a decade and struggled with it as an adolescent. 

Living with Chronic Pain I have acquired new mental illnesses and repeatedly had the conversation with psychiatrists that my mood is more a reflection of the weariness of waking up in pain day after day or from having to accept that the plans I had for my life and career are not possible given my physical limitations. 

Consindering everything, I think I'm a positive ray of sunshine. 

This past week found me experiencing a bad muscle spasm and pinched nerve. Fortunately, I have an accupuncturist who makes home visits and I respond well to alternative therapy. I also have a small pharmacy of Western medicine and an appointment with my neurologist as back up. It's still a struggle. 

So, after a previous week of pain and a few days on the couch, Blue Monday dawned as the beginning of a New Year; It was a rough day for me and involved more self reflection than I wanted to deal with on a cold day. 

We started the day with a fresh semester of music and art class. Memes and I started going to a wonderful music and art program run by two amazing moms when she was six months old. Since we have known them both women have given birth while they continued to design and develope this brilliant little program. 

Now we have moved up to the toddler class from the infant group and I noticed that the group has changed from a majority of parents to over half of the adults being hired caregivers as the parents were both working. The conversation around the art table was about which classes the toddlers were enrolled in, a nanny told me they have a different class everyday. I felt terrible. In my mind I am a stay at home full time mother devoting all the energy I have to being the best caretaker possible. 

Over the holidays I have been playing up the ideal 1950's homemaker motif because it matches my kitchen and makes everyone happy. I am trying to be the ultimate mom. I've been baking and cooking and almost keeping the house clean. I've bough new organizing baskets and this may be the year that everything has a place...

Anyway, these nannies made me feel like I am falling behind in classes for the baby. Then I came home and started worrying about whether my older daughter was engaged in enough meaningful extracurricular activities. 

My blues quickly turn into anxiety.

In the hazy memory of the days before my body rebelled I remember the woman who charged headlong into all kinds of intriguing situations and was often criticized for being overconfident. Now I find that I have developed many flavors of anxiety to accompany my illness. 

One form it has recently taken is Social Anxiety. To begin with I'm never sure what to wear: what is appropriate for my age and what I'm doing, or what reflects who I am at this stage in life. After that I get very defensive about my choice to be a full time SAHM. I know that it is a luxury. For me it is not really a choice. 

To top the day off, we attended a retirement party for a colleague of my husband. He is an Assistant United States Attorney for the Department of Justice. The retirement party was for a wonderful man who had worked in the office next to him and been a good friend since we moved here. I wanted to see him and wish him well. 

The idea of being in a room of working attorneys and having to make small talk terrified me. I am deeply insecure about my decision to be a full time stay at home mother and would love to be working part time once Memes is old enough for school. Hopefully, I will at least be able to write! 

In my cocktail chatter I found an alternate cause for Blue Monday: the lawyers who worked for firms all had to start the years billable hours at zero. It's a daunting thought.

I'm not sure what my master plan for this year will be. My efforts to be a fabulous and inspired Mom will continue. I will use my degrees to be the most amazing Mom in the neighborhood, on days that I can move around. I'm trying to make SuperMom a career choice but I'm not very good at it. 

I'm writing this on Gray Tuesday. On my phone. Hopefully I will get some more posts up soon, my draft folder is embarrassing!

Happy New Year, the darkest day is over! 

Cheers,

ALJ 

MM and the Letter D

As the Mother of a toddler I watch Sesame Street. This blog post is sponsored by the letter D.

I could easily write thousands of words on diapers alone. The topic of what kind of diapers a modern mother uses, cloth or disposable is a political statement about how much one cares about the future of the planet. While I was pregnant, I teased my neighbors that I was going to use the compostable diapers but not get a good back yard compost container and just see how long it took them to form a posse and come after me.

To prevent mean comments or starting a long dialogue, I will not tell you what kind of diapers I use.

Yesterday, when I went to change a diaper on my now 14 month old baby we did have a funny exchange:

Me: Did you poop in your pants?

Baby: Shook her head "NO"

Me: Who pooped in your pants?

Baby: Lala (our dog) points to the dog.

Me: Really, the dog pooped in your pants.

Baby: Laughs hysterically.

There are many other big D words that come into being a Myalgia Mommie that could also take up volumes and be great blogs: discipline, dinner, distraction, delivery, debt, divorce, really I could go on all day.

The D word that needs to be spelled with a capital D and sadly affects too many mothers is Depression.

Yesterday I dropped my Mother-in-law off at the train station and our last conversation together was about her Seasonal Affective Disorder (SAD) and my promise to send her full spectrum lights if she doesn't buy herself some by the end of next week. For people who suffer from winter depression, research has shown that using full spectrum light therapy has better outcomes than anti-depressant medications. I have seen the transformative power of a lightbulb in treating seasonal affective disorder firsthand and may just have some sent to my Mother-in-law so I know she will get better. The hardest thing about getting treatment for depression or helping a loved one get treatment for depression is that when you are really depressed you feel so hopeless that you believe nothing will ever be better so why bother with therapy. It's a silly vicious cycle.

As mothers we have our own special form of depression that can have devastating consequences. The period of pregnancy and the first year of life triggers changes in mood that cause depression called Perinatal Mood Disorder or Postpartum Depression. Recent studies have shown that a depressed mother with have lifelong impact on the brain development of her child. So, if one of your Myalgia Mommie friends is having more than the normal level of "baby blues" please help them help themselves, not just for their sake but for the sake of the baby. To me this point should be repeated thousands of times. A depressed mother doesn't interact with her baby, the babies brain doesn't grow, the baby is a measurable amount less intelligent when they grow up. What better new baby gift for a friend than helping her out of depression? It makes you the "Fairy Godmother" that insures her child will get a better score on tests and possibly go onto a better future. Wow! That is an amazing gift. 

I am incredibly fortunate to live in Chapel Hill where the University of North Carolina has the first Perinatal Mood Disorders in-patient ward. There are dedicated beds and a department of trained nurses who specialize in mothers with postpartum depression and support services for the rest of the family. The woman who runs the clinic speaks all over the country and I hope in years to come the program expands to other hospitals. Until then, I do know that anti-depressants are safe and effective in breastfeeding despite some commercials I have seen for class actions settlements. As I understand it, a small amount of prozac, xanax and some of our oldest anti-depressants will go into the milk but have no effects on the baby. Since we know that a depressed mother does have real and serious effects on the baby, it strikes me as a no brainer. Also, and this is a joke, a tiny amount of prozac in the milk would just make a baby happy, right?

As we head into the Holiday season filled with all kinds of stress and pressure, I have to throw out one more thing about Depression. Please remind your friends, Myalgia Mommies or not, that alcohol is a depressant! My days of being a drinker are behind me, alcohol interferes with my medication. I am always amazed by people who get sad at the holidays and think that getting really drunk will make them feel better. It won't. Unless you drink too much Champagne.

Oh no, a Diaper!

Cheers,
ALJ

My MM Story: Returning to the Island

It's my hope that this blog will be a special place, where the MILLIONS of women who live with one of the many flavors of chronic pain and fight through it everyday so we can still be loving wonderful mothers, find support and understanding. So today I will share my story:

Today, I am in a giddy mood. I am packing to return to St. Croix in the Virgin Islands where I lived for three years and found the most relief for my fibromyalgia and chronic migraines. Getting there was a decades long journey, and I had to leave because I became pregnant with my second child. My medical history and age made me a high risk pregnancy, so I needed to be in a really excellent medical center to have a baby, and the island does not have good healthcare.

In 2000 I was a student in one of the most difficult joint degree programs available, Georgetown University Law Center, and after my second year I started commuting up to Baltimore to Johns Hopkins School of Public Health for a Masters in Public Health. At the same time I was giving talks and on a book tour for I'm Not Sick, I Don't Need Help: Helping the Seriously Mentally Ill Accept Treatment (Vida Press, 2000)

I was also a mother. I thought that if I had a baby while I was in my 20's and in school, she and I could go to school together, and by the time I was done with the book tour and graduate school, she would be ready for Pre-Kindergarden. Being a student gave me the flexibility to spend time with my baby. I seriously underestimated how hard graduate school and the book tour would be.

My migraines started at age 5. One year, my Kindergarden teacher came to visit DC and looked me up. I didn't remember her. She taught for 20 years and said she would always remember me because I was very bright, but every few weeks I would come to class, hold my head and cry because it hurt so badly. I was the only child she had ever met that had migraines. In my life, I don't remember a time when I didn't suffer blinding migraines. Honestly, as a child I thought everyone had them and that I was just weak because I couldn't hide mine.

When we were packing up our house in DC, I found the thick file of notes from my neurologist from the period when the fibromyalgia attacked. At the time she was treating my migraines with Botox injections at the base of my neck (I have cervical occipital vascular migraines), and I told her that I was feeling radiating pain throughout my body. The pain was spreading and getting worse. Fast forward a year, and I was almost catatonic in bed from the pain. As I have come to understand it, Fibromyalgia is a spectrum disorder. It is possible to have a mild form, and I got the short straw and such a severe form that when I flare, my legs collapse under me and I can't walk.

The rheumatologist who finally diagnosed me with fibromyalgia told me that I needed to get my life "down to zero" because all the type A super stress that I thrived on was feeding my disease. I was devastated. Over the course of the next several years, I tried to work, volunteer and continue to be everything I had planned for myself. Each time I gave 100 percent, I would end up in bed for a week. After a big push (campaigns, organizing Katrina relief, helping a friend, etc.), I would go to my neurologist for emergency trigger point injections and get a lecture.

During this period I went completely vegan. I bought all my food organic and local. I had a great acupuncturist that provided some relief, but she fired me after I spent a hectic week in the hospital helping my best friend who had a brain tumor.

My husband, daughter and I went to Kerala in South India where I spent two weeks getting traditional therapy. They told me on the phone that they could cure fibromyalgia. When we arrived they told us I would need to stay 2 months. At least I tried.

Living on Capitol Hill in Washington, DC, watching my friends have wonderful careers while I spent two days a week in bed, was destroying my self esteem.

I was working with the best doctors in the country, but there were no drugs to treat fibromyalgia. Even now I meet medical professionals who believe that a diagnosis of fibromyalgia is a "catch all" for all people who want narcotics. I never know if I should lecture them or shake them!

At the same time wonderful friends from college and law school moved on with their lives, but I still hadn't gotten better. I think that is what separates the Myalgia Mommies and Chronic Babes. Many people didn't want to hang around because after five years I was still sick, not getting better, and had a disease that many doctors didn't think existed. It is hard to be around someone who will always be sick. I learned this when my best friend was diagnosed with a brain tumor. We all rallied around him. There was a walk to cure brain tumors, and we had a great team. I have never seen a walk to end migraines. The definition of a chronic condition is that it will never go away.

Though life on St.Croix was warm and there was very little stress, I would still have bad days, migraines and some flares. The circle of people I surrounded myself with understood this and helped me to adapt to life with my illness.

One of the best gifts I was given was when my daughter began riding horses. It was our job to feed all the horses a few days a week. At first I said I couldn't do it because lifting the 50 pound feed bags was too much. The wonderful woman who was in charge said she would lift the bags. She taught me how to make each bucket weigh less than ten pounds and made it clear that she would take no excuses. I had to find a way to do the work. It was great exercise and time with my daughter.

Please feel free to share your story of how you have built a life around your chronic pain. Living gracefully and full of love is not easy. It is possible. I know it is absolutely worth it.

Have a great weekend.

Cheers,
Anna-Lisa

Weathering the Storm

This blog is called "Myalgia Mommies" to be as inclusive as possible for all mothers living with some form of chronic pain. The more mommies I meet and the older I get, I am beginning to believe that most of us are "Myalgia Mommies".

I decided to start this on-line community because I have a Masters in Public Health from Johns Hopkins School of Public Health, so I am a pretend doctor and keep up on all the reading anyway. Also, I have suffered migraines since I was 5 and was diagnosed (after over 2 years of tests and visiting NIH to determine mystery illness) with a very severe case of Fibromyalgia in 2001. In the decade that I was dealing with my chronic pain, waiting for a good drug to be invented, I never found an on-line community that was positive support and included the challenges of parenting. 

I love Chronic Babe, but she gets massages and makes martinis. I have kids and chaperone dances, drive all over, plan lessons, play dates, sleepovers, etc. Mom stuff and cool no kids stuff is very different. 

This post is about the huge storm Sandy, hitting the East Coast today. 

I am mostly a Twitter person and am calling it Tea Tuesday! 

Mommies who have kids home from school, make some tea, get some craft projects and have a great day. I can't go outside today unless I am wearing about ten layers of clothes. For some reason I flare when I get cold, and it is 40 degrees outside. So, I'm building a fire, making tea and blogging. Later we will bake some cookies, sing some songs, maybe do a puzzle...

The latest meeting of the Fibromyalgia research group said that daily 30 minutes of exercise helps, but the best kind for me and others with various rheumatoid  problems is a warm pool and water exercise or swimming. See previous post, my baby is in a cast so no pool for us!

I don't know how some of you Myalgia Mommies live in cold places. Feel free to leave tips in the comments section. My aunt is a Myalgia Mommie and lives Up North. Her myalgia is a fused disk in her lower back that can't be operated on. The funny thing about my Aunt is that if the temp gets above 70, she gets really upset. She can't handle the heat. I love her to pieces, but if I go below 65 my whole body hurts. We rarely see each other, but we talk on the phone. We both have Scotties. 


I hope you all have power to read this blog and weathered the storm. We only recently moved back to the mainland from the USVI (great warm place, gets several hurricanes each year!) so I am familiar with hurricanes. My myalgia has a hard limit that I can't lift over 10 pounds or my back will go out. I've always relied on the kindness of friends or yelling at hubby to put up our storm shutters. 

If you and your kids are fine, please go check on an elderly or disabled neighbor. 

Also, if you would like daily silly tips from me, you can follow me on Twitter at IslandAnnaLand. 

Stay Warm and Dry!

Cheers, 
ALJ

World Mental Health Day

Today, October 10th, is World Mental Health Day. The World Health Organization has identified Depression as the focus for this year. Globally, depression is the second greatest burden of disease affecting 350 million people worldwide.

For a Myalgia Mommie depression is a little black dog that is always nipping at our heels. I have found that we have an amazing weapon against it: our children.

True clinical depression takes clinical intervention and is so overwhelming that when an individual is in the throws of the disease, even our darling children can't reach through. This post is about "Mental Wellness," a crucial part of life that we do everyday and that keeps us going as Myalgia Mommies.

Most of the activities of finding a daily moment of beauty, engaging in an activity that gives us joy and finding pleasure in simple acts, we have adopted as a way of life. Studies have shown, and health professionals call this, mental wellness.

Recent research into my myalgia, "fibromyalgia," has shown that medication alone will not diminish symptoms and a holistic approach including these lifestyle changes is needed to address symptoms.

My darling baby is waking up. She is my daily joy and the reason this blog has so few posts.

I hope all you Myalgia Mommies have a chance to sit down with a cup of tea today, smile to yourself, congratulate yourself for mindful self-care, and bask in the beauty that you are. My tea party will be me and my baby, and we will toast you.

If it is possible to gain strength and support knowing that you are part of a greater web of women quietly trying to live with grace through a similar circumstance, then this blog has served it's purpose.

Please share a picture or short description of your cup of tea.

Hopefully today we will put up some pumpkin lights and have a photo worthy of sharing.

XO
ALJ