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

MM and Cleaning with Bleach

In my Twitter feed I am calling today Toxic Thursday.

Following Hurricane Sandy, FEMA and The Center for Disease Control (CDC) are both advising people to be careful cleaning after the storm because the water has toxic chemicals and raw sewage all mixed together. After the storm water recedes there is one miracle product that will disinfect and kill bacteria, flu viruses and even AIDS: BLEACH.

Decades ago, as a high school student, I participated in the CDC AIDS companion advocate training program. This was back before we knew what AIDS was, and back when some ignorant people thought if a mosquito bit someone with AIDS then bit them, they would be gay. It was Colorado. In the class I learned that a solution with a little bleach would kill the AIDS virus.

Last week my baby was sick. At the pediatrician I learned that one of our local elementary schools has a whooping cough outbreak because I live in an area where people don't vaccinate their children (please vaccinate your children). I have a Master in Public Health, and I don't want to tell you about the MILLIONS of children who die every year. Fortunately, my baby had a different virus and recovered in 24 hours. All of the things going around can be killed by bleach.

When I first became bed ridden and incredibly sick over a decade ago, I was a medical mystery. I have always been chemically sensitive and use only plant based cleaners in my house.

Once, helping a friend move in college, we mixed bleach and ammonia while cleaning and almost killed ourselves. I've learned many things since then. Now I use organic cleaners and bleach.

There is increasing research that overexposure to a sterile environment is harmful to young children. Eating dirt helps build a good immune system. Generally, I use this as an excuse not to clean my house. Also, I let my kids get really dirty.

Last night, I hosted a Halloween party, and now my house is full of germs. I am immune suppressed, so now I have to clean. Other people's children put my kid's toys in their mouths, and it's time to disinfect while the baby naps.

I already have a headache. If you want to play from home, you could bet on how long until my fibro flares from the strenuous activity. Normally, I would stretch out the cleaning over the course of the week, and wait until the weekend when my hubby can help, but Sunday we are going out of town, so things must get done.

These are the things that make us Myalgia Mommies special. We decorate our houses like a Kindergarten classroom then have to take everything back down. I miss the days of putting on a costume and going to a party!

Please feel free to leave a comment with your best cleaning tip or just say, "Awe, poor thing, housework is evil!"

Cheers,
ALJ

MM Health Alert

Hi fellow Myalgia Mommies, we are under a few public health red alerts that I wanted to share with you.

On the East Coast and South there is a nasty West Nile Virus going around (in St. Croix our mosquito bourn disease is Dengue Fever, 1in 3 die, others call it the "bone break fever. The symptoms basically are the same for my fibromyalgia so I was not sympathetic to nurses who had it and whined about being in pain!)

Please cover yourself and your kids in bug spray. The West Nile is getting into a death count.

The second warning applies to everyone who comes into contact with pigs. Swine flu is going around. You can get an H1N1 vaccine ordered thru your pharmacy or primary care doctor. Dying from Swine Flu is just silly. I'm just avoiding pigs (except in the form of meat!) but my kid got the vaccine in 2010.

Third warning, this is local to NC, we have had to put several horses, a few dozen dogs and more to sleep for rabies. Even the baby is now current for rabies. The treatment is painful if you get to the point where you are foaming at the mouth, they put you in a medically induced coma.

Lately I have been working in West Coast time zone, living with a baby on the East Coast. I need more sleep.

Finally, please don't start any fires.

This is the end of Myalgia Mommies public health warnings for Labor Day Weekend.

Xo
ALJ
JD-MPH