Greetings from the Garden

I cheated.

This year I got a head start on the garden.

One of our favorite books is Planting a Rainbow by Lois Ehlert (Harcourt).

We went to the nursery and bought the rainbow (A good friend once told me to bloom where planted, gardening is always the beginning of a new home).

These are the benefits of living in Niger, the flowers are aways in bloom.  The rainbow here is the familiar; lantana and birds of paradise for the butterflies to attract friends to the garden, citronella to keep pests away and the same lettuces we love.

It's a good life for a Myalgia Mommie and I hope to write more as we settle into a new routine. I have an amazing garden and the children are flourishing. We relocated to Africa during the Holiday season to try something completely different.

Living with Chronic Pain I find gardening and meditating to be most efficacious for a myriad of symptoms, at least for me.

As research continues to demonstrate, there is a powerful mind/body connection. I enjoy gardening because we can witness the fruits of our labors in a relatively short period of time. It also gives a sense of achievement or accomplishment. (Except the orchids I killed, but that's another blog...) Sometimes, I need that short term validation. The salad we picked last night was wonderfully satisfying.

Parenting is such a long game. As we talk to friends who are becoming grandparents, I realize this isn't a phase of life: this is life.

I had to come to Africa to find a place where I could raise my three darlings in the environment that I think will be best for their growth. Also, it sounded like a fun adventure. Here I have found people raising happy children with little or no resources. I've also found some orphans to give my extra energy to, so things are good. It's strange being in such an empty place during a time of great migration.  I will try to learn different lessons and write again soon.

ALJ
Niamey, Niger

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 

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.

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

Mommie Blogger FAIL and Insight!

If you see me in real life my baby is wearing leg warmers. It is not me having a childhood flashback. She is in a cast.


It's a long story but most things involving parenting are. Mommies have a different road. My poor baby just woke up. She cant stay asleep for her naps because of the cast.

We were at the hospital on October 13, with a 13 month old baby and I was sending emails about a 2013 calendar as a fundraising project.

I had to call in a refill on a "break thru" drug and it said refill untill "7/13" so I called the parmacist thinking it was 14/Ocotober/14. Im so tired, I am time traveling.

I wanted to post that on facebook but my husband said it just sounded weird and I should go to bed.

That pretty much is how I feel about blogging about being a Mom who suffers from some form of Chronic Pain. The more I grow up, research, make deeper connections to other women, the more I realize that most of us have some major issue in life that is chronic pain.

My really deep thought for the day is that I met a woman who has a husband who is being tested to determine what his chronic pain is being caused by. They have 3 teenage girls. That's heavy lifting. So I met a myalgia mommie by proxy because she is reading all the tests with her husband and probably understands more medical terms.

My other deep thought is that all the research from every disease keeps coming back to one thing: healthy sleep patterns.

My blogging time is when my baby girl is taking her mid morning nap and my house is not a biohazard. That can be a narrow window. We live dangerous lives. Also, need more sleep.

I feel like I did one good deed today. I reminded the myalgia mommy I met to check her husband for vitamin D levels. Often just a piece of the puzzle but they don't check it in men. My amazing island Doctor taught me that.

If you read this, and have had a child in a cast, please feel free to post tips for keeping her entertained and cleanish!

Thanks.
Anna-Lisa

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