Waiting for a Miracle

Yesterday I was bedridden from a bad flare. Fortunately, my husband didn't have a work conflict and was able to take the morning off to take care of our baby daughter.

After a decade of living with my chronic illness, I can usually predict a bad day and at least understand why my body is in revolt and agony. This one came at me from out of the blue. With the unseasonably warm and gorgeous weather we have been having, I can rule out that cause and it seems to be truly out of the blue.

This time of year with the holidays approaching, shopping trips to be done and all kinds of stress, there could be many ways that I would have over-extended myself. I haven't gotten started on anything. The holiday decorations are still in boxes, I haven't gotten a tree yet, if anything the pressure of my growing to-do list is the only stress I have. Even as I write both my legs are in agony. What is bothering me more than the pain, which I have grown accustomed to, is that there is nothing I can do except wait it out.

I've made the next available appointment with my neurologist. When I go into the pain clinic I will fill out the paperwork to indicate my recent treatment. On the form are boxes for what "alternative" treatments I have tried. I usually get to check all the boxes. Over the years I have tried everything. My diet is mostly organic, local, and over thought to absurdity. Once, I went gluten free for several weeks to see if I was part of a small percent for whom gluten triggered Fibromyalgia pain. In retrospect, it's a funny story. If you remove gluten from my diet I become incredibly hostile. It was PMS except worse for weeks, I would go into the kitchen, rummage through the cupboards pick up rice crackers and yell at my poor spouse about how much I hated anything made out of rice. My husband is half Indian and loves rice. It was a long, difficult month for him. Now we always keep cookies made from flour as part of our emergency rations.

For supplements I take calcium/magnesium to prevent migraines, vitamin D for a deficiency, prenatal out of habit, and B vitamins. When I have the occasional beer I make a bizarre version of a shandy: half beer and half lemon lime B vitamin fizzy drink. I think it's yummy. So I definately get to check the box that I take supplements to try and prevent my chronic pain.

I use wonderful buckwheat filled velvet things that I microwave to apply heat therapy. Sometimes they help to allieviate muscle pain, when they don't I stay nice and toasty. To make one at home, fill an old sock with rice then microwave. (a physical therapist told me that trick!)

This month I haven't tried any acupuncture. In part because it's the end of the year and my medical savings account ran out months ago. Also, I have found that for both massage and acupuncture the relief I get only lasts for hours not days. So while it is nice, I am often frustrated by it because if I drive to the appointment, by the time I get home, sometimes I will be back in the same condition as when I left the house.

During the years when fibromyalgia was still unrecognized by many doctors (I will never forget when Lyrica came out and a few friends called me to let me know that my disease had been cured because they saw an ad on television, bless them!) friends and family would share wonderful strange advice that they picked up from who-knows-where. My favorite example of this came from my step-mother-in-law. She is a public school teacher and had a colleague with Fibromyalgia. One evening after dinner she again told me I wasn't getting better because I didn't want to be better and described how the teacher she knew was getting great results eating a special ancient soup. In college a friend who was always trying the latest diet craze made me try the "cabbage soup" diet with her. We made a huge pot of vegetable soup which made her apartment smell like what I imagine old Russian women smell like, it tasted awful. The concept of the diet was that you could eat all the cabbage soup you wanted for two weeks and you would lose weight. I couldn't eat it for one meal. I think my friend held on for about four days. A few months after my step-mother-in-law told me about the miracle soup she reported that her friend had left school on medical leave. The soup didn't work for chronic pain either.

Deep down inside is a part of me that hopes that there is something that I have overlooked. Some simple obvious aspect of life that I could change that would make me better. Since I was diagnosed over a decade ago I have changed so many aspects of my personality. I've embraced a mindful, peaceful way of life. Slowed down in every aspect and learned to take each moment as a gift. I see beauty in small things and appreciate moments that I took for granted. Oddly enough I think I am happier now than I ever have been. I'm still checking the comments of this blog each day. If one of you have the recipe for magic soup, please share it. My cooking skills are not brilliant, but I can make soup, and I know all the Myalgia Mommies would also appreciate a good recipe. If it comes in the form of miracle cookies, with flour that would be perfect!

Until then, I'm going to take a nap. This afternoon I hope to get a Christmas tree with my girls and the miracle I'm looking for will be that my cats and baby don't break any of the ornaments I hang from it.

Happy Holidays,
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