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

MM and Thankfulness

I'm writing this post from my smartphone. My mother-in-law arrived late last night and is sleeping in my office. So please be kind to my typos.

The blog has not been updated in a few weeks because I had a minor surgery. Thankful for modern medicine and my wonderful Myalgia Mommie co-founder and friend who came over and took excellent care of me while I recovered.

Also very thankful that I am at a point in my life where I no longer need routine surgery or visits to the Doctor to control my chronic pain. The biggest hurdle to my surgery occurred in the pre-op phase when they tried to put a line in my arm for the sedative.

Even now I have a blood draw every 3 months to check various blood levels. Somehow even living on a beach, on the equator I still always have a Vitamin D deficiency. If my white blood count is ever normal I will be thrilled because that will mean that I am cured and can turn this blog over to someone else!

When the surgeon checked the line and the bag of sedative, it wasn't going in. As with so many people who suffer from chronic pain, I look great! Sadly, I have scar tissue in my arms around my veins from having blood taken so often. Needless to say, I panicked. The procedure was to have teeth pulled, and I am really afraid of additional pain. The sedative found its way into my system, the oral surgeon removed my broken and infected teeth (long complicated story) and I am mostly better.

When he called the next day to check on me I told the surgeon that my greatest concern was that the operation would trigger a migraine which would be much greater pain than having teeth pulled. It didn't. Now I have company and am getting ready for the holidays.

This year I am Thankful that I am not responsible for being "The Hostess" although the many years that I opened my home to a huge party gave me amazing stories and memories. My personality is very "type A" and I would spend at least a week making sure everything was perfect. Getting new recipes, arraigning flowers, picking the perfect wine and decorating my house. So, I do miss it, but my family prefers the more relaxed version of me.

We are taking the girls and driving to see their Great Aunt in the mountains a few hours away. It's just far enough that we are leaving a few days early and staying in a hotel.

Almost a decade ago, when I was very sick, I read a Blog about traveling with a chronic illness. I think it was Chronic Babe. The advice was to wear comfortable clothes, bring healthy snacks, stop every two hours and have fun. This trip I will have my 11 year old, my baby, and my Mother-in-Law (who also has health problems) traveling in the car with me. Any Mommy Blog will give you the same advice for traveling with children. In the past, we have taken my Grandmother out of her nursing home for holidays and the instructions are the same. In fact, I had to read the Drivers Manual to take the test and get a new liscense; it said when on a trip plan to stop and move around every two hours. Writing this blog I often feel like any advice I would have is obvious and written in numerous other places.

I feel very blessed and thankful for everything in my life. At the same time, I will not list it here because no one likes smugness.

Thank you for reading and please feel free to share what you are thankful for this year.

Cheers and Happy Thanksgiving,
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