Monday, June 26, 2017

My Butterfly Effect

One of the fun things about being a parent is that you can teach your children facts and reality as you perceive them. I have named our new home in Africa "La Maison Des Papillons" (The House of Butterflies) and am proceeding to teach them a completely incorrect version of the Butterfly Effect. 

Life in Africa has been a daily struggle and adventure. I have taken the opportunity to create my own butterfly effect of small acts of kindness and goodwill to try and always teach by example. 

Initially, we basically stayed within the walls of our house following strict security guidelines and what we were told about our neighborhood. In this time I decorated our metal interior doors and the wrought iron stair rail with dozens of lifelike and life sized butterflies to remind my daughter of home (she had a butterfly room and we used to visit the butterfly pavilion at the local Museum of Life and Science on a weekly basis)  and break up the whiteness of our new embassy provided house. When we did go out I try to smile at everyone and greet each person I see with a smile and "Bon Jour" or "Bon Soir" depending on the time of day. 

In our first month here I met an artist, Boubacar Djibo, who has a small metal shack where he sells his paintings at one end of our street. He was patient with my broken French and we found a way to communicate. Boubacar loves Niger and it is reflected in all of his paintings of local scenes and nature. He wants the rest of the world to see the joy and beauty here. I asked him to come and paint a mural in our living room; now we have large trees, some bright flowers and two large butterflies adorning the walls. My children were enthralled by our artist in residence and painted along with him as they rediscovered their love of art. 

In an earlier post I described how one of the first plants I recognized to fill my new garden with was a lantana, so we have a butterfly garden. I finally had an open house and in the invitation told everyone that we lived in "La Maison Des Papillons." Our first party was also a showcase of Boubacar's recent works to support the artist and share some of the bright colors with all in our acquaintance. I also printed out the wikipedia definition of "the butterfly effect" and scattered it on coffee tables. 

As each day brings whatever new challenge or pain for me, I try to be as relentlessly positive and friendly to those around me as I see so many other people who struggle to survive.  That is the challenge of living in Niger: we are surrounded by profound poverty. Outside our walls are naked children. When I drive around the city, children swarm my car every time I am stopped in the chaos of traffic. I try to keep extra bars, candy or change to always give them. When I don't have anything I smile and apologize. I never ignore them or pretend they aren't there. I also can't stay home; somehow I still need to go to the store everyday for milk, juice or bread. Now, when I run this errand I am grateful of the luxury of affording whatever food or whim my children have and being able to quickly meet that need. 

I've tried to unlock the city by driving around and being courageous. Others in my position have retreated to their homes but I want to understand where we are and in each interaction give a positive impression of Americans who are compassionate and good. We have a military presence in Niger and a travel warning that had scared away the tourists that were one of the main sources of income for many different sectors. If shopping for handicrafts can be a force of good then I am a superhero. With the help of a missionary friend I ventured into the local fabric markets and have had long skirts made.  It only took one assisted trip before I had befriended a few merchants and have since returned numerous times myself and with others, my daughter has a wardrobe of new dresses. The bright fabrics are addictive, I love to buy them but lack the vision to design interesting things to make with them so for now am hoarding fabric. 

We have found an orphanage to help, they are on Facebook at REMAR Niger. Initially the trips were planned by someone at the embassy but she has moved on and now the activity is mine to plan. When we arrive the children line up and sing to us, in order of size the rock back and forth while bursting with a hymnal. The local law prevents Americans from adopting. Last month I prepared for our trip by purchasing candy, a bushel of mangoes and printing out sheets of Maya Angelou and Serena Williams to color. I also found a French translation of the poem “Still I Rise" and printed out several copies for the older girls. After the children sang to us one of the older girls read the poem and the everyone colored a picture. On a previous trip when we gave them bunnies to color they gave us back the pages at the end of the visit. This time they focused on coloring a picture of a woman who looked like them and wrote famous words with reverence and concentration. As they finished I noticed them slipping away to put the finished pictures in their private hiding spots to treasure, no one offered to give us back their finished work. 

Niger has recently been rated the worst country to be a female child. I don't want to blog about the sadness I have witnessed. Each day I try through my actions to send ripples of a little joy and inspiration. 

Here I have a gardener, a nanny who helps with the housework and a lovely woman who comes to make dinner. I hoped that this help would give me space to rest and feel better. It may be the heat (average temp last month was 110) or that I still wake at 5:30 to make pancakes and interact with my children, but I find that I am overcome by fatigue and pain every afternoon. Fortunately, I can sleep for a few hours. 



A decade ago when I was very sick, a family member asked "what would you do if you lived in Africa?" trying to imply that my fibromyalgia wasn't real and that as a twenty something I needed to "tough it out" for the sake of the family. Now I know what I would do in Africa. I keep a positive outlook, take care of my children first, and help as much as I can before the pain and fatigue drag me into bed. 


Monday, February 13, 2017

Valentines from Africa

It's been a few years since my traditional Valentines Day blog. 

Even in Africa my tree is still up. I haven't managed to organize my usual mailing this year. Instead, I’ve been inspired to write poetry again lately and I’ve decided to share it here as my Valentine’s Day gift to you. The first poem was inspired by our new life as an Embassy family living in Niger.  We are strangers in a strange land. So I wrote this poem about kindness: 

The Feather of Kindness

A feather fell from one of my dear ones cages
“An Angel is near.” she said with a smile of love


She sees feathers everywhere.


I found a pile of feathers in our new home

Are angels everyday acts of grace by friends?


I was profoundly grateful.

We saw a feather on the playground 
She said: “Don’t touch that, it’s filthy!”


Did I miss your kindness?


We try to do our daily act of good

to help who we can and those I love


I find feathers everyday.


Here in this desert Oasis I have seen such wonderful

exotic birds, I can’t wait to explore...


What feathers have you found?





This second poem is my gift to everyone. Especially myself. 



The Bubbles of Forgiveness 

Forgiveness is like Champagne 
when you truly feel it and let go of
all those knots of fury into light
and then it just bubbles and bubbles 

and floats away

The euphoric feeling of bubbles 
Reaching like a child to hold forgiveness
Laughing at how easy all the anger 
was to simply let go, like so many

Bubbles on the wind

Champagne impedes dementia they’ve
found and so I’ve put my faith as always 
in the magic of science
I only drink Champagne and always savor it for the bubbles

I’m believe this forgiveness will have some 
Salubrious effect on my mind, but I 
Know that bubbling away that anger was good for my soul

Bring on more Champers!






Happy Valentines Day, please have a glass of something bubbly and try the euphoric feeling of forgiveness if you haven't lately. It has done me a world of good. 

This year I didn’t mail many cards, I’m still getting settled, but do know that I am thinking of you constantly and sending all my best. 

ALJ



Monday, January 30, 2017

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


Tuesday, November 22, 2016

A safety pin story and plea for Mental Health Reform

This originally appeared in my other blog The Silver Ribbon Campaign and Briefly here on Myalgia Mommies. The bill passed through the house and will be considered by the Senate after Thanksgiving. I urge you to call your Senator, we can still get a positive change in 2016. 

I am wearing a safety pin as a sign that I will stand for tolerance and all safe spaces. That includes brain science....

It's funny how timing happens. Today H.B. 2646 The Helping Families In Mental Health Crisis Act is being marked up in the House of Representative Energy and Commerce Committee. It has been over a year since this bill was introduced. It will address many of the holes in the current mental health system. It comes at a time when many are going on record as demanding better access to mental health treatment. I hope the bill is passed as quickly as possible.

Over the years I have called and emailed the congressional offices many times. Below is the message I sent today. I am not passing out Silver Ribbons at the rally. I am asking that everyone please put a safety pin in their lapel instead. This is a symbol that we believe in brain science and are making sure it is funded. Thank you.


Thank you for taking the time for fully considering the substance of H.B. 2646 today. This fall it will be eighteen years since I lost my mother, Margaret Ray, to suicide. I have tried to make things better. Recent statistics would indicate that my efforts have not been successful. All I did was pass out Silver Ribbons. I think I already gave you one. If you don’t have one and want to show support for Mental Health reform please just put a silver safety pin in your lapel as a sign that you believe we can cure brain diseases.  It is an excellent bill.


When I was in school the Surgeon General released a report on Mental Illness and stated that it was the greatest Public Health threat facing the country. I had the opportunity to see the science of brain imagery and the cutting edge of research first hand when I went on a book promotion tour in 2000. Over the past sixteen years I have endeavored to keep up with the reading and have changed and evolved some of my understanding of what a brain disease looks like. We've come to understand profound things about ourselves and our brains. We have tried some programs that worked and sadly are seeing the glaring mistakes that were made. We need more beds and a general increase in funding. H.B. 2646 addresses many of these issues and takes steps to move forward with best practices.


During that long ago tour, I passed out silver ribbons as part of a larger national effort. (I also inherited the foundation for my poor mother who took her life when I was a law student. When she took her life she left a hole in mine and because she involved the media, she put a huge red flag on my internet background check. Whether or not you believe in stigma against the mentally ill, I believe that it has had a strong impact on my career options.) At the time several of the national mental health advocacy organizations were supporting the silver ribbon for the brain campaign. Mental health is just not something people want to talk about. I don't think anyone wants to wear a silver ribbon.

Almost everyone is touched by a story of mental illness. If they haven't experienced it yet, they are either very young or incredibly self absorbed. Helping someone with any kind of bought of illness can be exhausting, it is harder when the illness must remain a secret. Over the past few decades, getting mental health treatment in the US has been a struggle for many resulting in long sad stories. I have found that if you wear a silver ribbon and put yourself out there as a mental health advocate, people are going to tell you horribly sad stories that you can't do anything to help.

So, thank you for doing the hard work of listening to all the families who have called in and told their stories to you during this lobbying effort. I wish I was there with a basket of silver ribbons. If you wish to show your support, please put a silver safety pin on your lapel to show that we take care of invisible diseases too and everyone will try to be grateful.

Sincerely,

Anna-Lisa Johanson, JD-MPH
Please join me in wearing a safety pin as a sign that you believe that science will overcome mental illness. In these sad days, it's a way of saying that we are doing the best we can. 

Saturday, March 12, 2016

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

Monday, January 13, 2014

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 


Sunday, November 10, 2013

Veterans Day Thank You

On Veterans Day I'm being grateful for the Veterans in my life and thinking of the recent Veterans of the Iraq and Afghanistan Wars. 

Thank you. Everyday. 

It's Veterans Day Weekend and I'm thinking of the chronic pains suffered throughout the military families that I know. 

I'm really grateful. 

Happy Veterans Day. 

Cheers,
ALJ

Thursday, November 7, 2013

Superheroes, supershopping and Superfoods

My daughters were superheroes for Halloween. 

The baby was Super Meme and had been practicing her hero leaps for the month of October. She must have over heard her sister and I talking about costumes (being 2 she is very impressionable). My tween and her middle school friend were matching superheroes so she could have eavesdropped on them. The friends high school sister and her friends were superheroes too, so all ages here were in on the conspiracy. (As were the major retailers!) I scrambled to find a costume fitting the role of Super Mom and wondered if writing this blog disqualified me. 

On twitter I joked that feminism has succeeded. (I hope it has, but as I get older I realize the word has so much baggage it will take another generation!)

My fall hobby is to conduct alumni interviews for my superlative alma mater and the young people I meet are all superheroes. They are high achievers with bright futures ahead of them and are fun to meet. I find myself wanting to hang out with thier parents or ask them to mentor my daughter. It is a positive experience that fills me with hope for the future, and ideas of activities for my kids. I find that I can't pass judgement on these wonderful younge people and am writing this blog now when I should be completing the reports from my interviews. The entire process has led me to understand the basis of my greater writers block: whatever you put in writing becomes permanent. 

My super girls are thriving. The little one deleted the first draft of this blog and used my iPad to order $352 worth of random things from my favorite shopping app. I am conflicted over whether to be proud of her ability to use these devices that intimidate me or ashamed that I am letting my two year old play on evil screens. 

When I called to have the order deleted the woman was not at all surprised when I said my toddler had placed the order. She was impressed by the number and specificity of items. The baby has excellent taste.
 
My older daughter plays on the Internet too and brought me the magic tablet with a screen opened to what looked like a Fibromyalgia support or advocacy page but upon closer scrutiny was selling some secret formula supplements that promised to help provide more energy and improve quality of life. 

I don't know what ads get placed around this blog so for all I know she could have found it in the margins here or in a site I  recommended. 

My initial reaction was to say "Thank you, but I don't think these will work." 
I think it was the wrong answer. My next answer was to tell her that I already took the best vitamins medically recommended and would stick with those but I'm lucky that I had a doctor who did all the reading to tell me which handful of vitamins to take. By this point she had walked away. 

So I turned to my husband and realizing that the teachable moment was lost, allowed myself to succumb to neurosis. 

I asked in my most accusatory tone "have I said anything lately?" Then added some positive "I've been doing great!" This has the added advantage of being true! Recently I've been experiencing pretty stable health for me, so I have no idea what prompted my daughter to find the ad for a fibro site that promised me energy. Bitterly, I said that if there was a pill that worked for pain relief and better sleep, we would all know about it and someone would be fabulously wealthy. 

There was a time years ago when I scoured the Internet looking for answers and was willing to try anything I found thinking that there was a better answer out there than what the doctors could tell me. These days I live in a state of resignation where I am confident that I am doing the best I can given what is known about my illnesses. I would even go so far as to say I think I am an expert in living gracefully around chronic pain and enjoying life. 

On a constructive note, I did realize how fortunate I have been to have a doctor who combines both Western medicine and vitamin supplements. A large part of my health is from my steady diet of multiple daily superfoods I learned from my doctor, books, friends (who had degrees in nutrition) and experience. 

There is a list of foods that have a higher concentrate of vitamins and minerals than others. The superfoods include: 

Kale
Brown Rice
Eggs
Cocoa
Sweet Potatoes
Turmeric 
Red Wine
Apples

Those are the really easy ones and if you google "superfoods" there are multiple lists. 

When I remember to eat well I feel much better. Finding the right balance for me took time and continued effort. The first thing I end up having a deep talk with other Myalgia Mommies about is diet, what you eat is a huge part of how you feel. It's also something that you can change about your life. Trying to get my kids to eat a balanced diet is a daily struggle. 

I have been very impressed by some spinach brownie served by another SuperMom. She even made them in a crockpot! So there are more tricks to learn and I won't complain. 

For Halloween I ended up wearing a Cat Woman t-shirt. My SuperMom costume (I was going to wear my vintage MomsRising t-shirt) was in the laundry! 

Maybe next year. 

Boo!

ALJ

Thursday, October 10, 2013

Booted!

If you hear a rumor that I have bird bone disease, it's just the kids. I made that one up. 

I broke a bone in my foot. Getting out of my car. Weeks ago. I have known this since I wrote my last blog and am now wearing a boot of shame.

For the first few weeks that I had the stress fracture in my foot I did not seek medical attention. My foot hurt, walking hurt and the pain radiated up my body. I thought I was having a bad flare with a hurt foot. In the back of my mind part of me was convinced that there was something very wrong with my foot but I was in pain and thought I might be overreacting. A decade of chronic pain has taught me to listen to my body, then tune out the noise and try to get on with life.

My first solution to the pain in my foot was to try and buy new shoes. I am still stuck in the phase of personal evolution where I hope shopping can help problems. Once a year my daughter and I are enthralled by the new school supplies and believe that we will achieve a state of perfect, color coordinated organization if only we choose the right binder and desk accessories. Since I broke my foot the week before school started I knew that if I found a pair of tennis shoes (I prefer to go barefoot and have spent the last year in ballet flats with no support even when on walks) that the correct cushioning would provide relief. 

I have been looking for a new pair of tennis shoes since my last pair gave out during my pregnancy. On a few quick trips to the sporting goods store to buy equipment or shoes for the tween I've tried to find some for myself but they were always way too bright. Once I found a pair I liked that fit and my daughter quipped that her best friend had the same pair. I can't dress like the Tweens. Also, she wanted the same pair and I couldn't buy myself the status shoes my child wanted. It just seemed wrong. 

In a row of neon shoes, I tried to find something timeless and mature. My daughter told me anything gray was for old people. I told her anything fluorescent was for the young. There was a pair of all black. I bought them to prove a point. My foot still hurt. Also, I look like a ninja. 

(I have since been told that my black ninja shoes look like "Amish sneakers") 

Later that week my daughter hurt her hand in tennis and the pediatrician sent us to the walk in orthopedic clinic for an x-ray. While we waited for results (she needed a smaller grip raquet) I thought "I should have them X-ray my foot, I know it's broken" but then we would never have gotten out of that clinic. 

Instead I waited another week, complaining on twitter, not taking my morning walk, skulking around the house and feeling wretched as the hurt foot triggered a flare and a headache. 

The episode of explaining my chronic pain disorder, that I waited so long for a boot and x-ray and that I wasn't seeking any pain meds is a blog that has already been written and isn't that interesting. Nurses are amazing. 

Now I have a black boot and compression baths. Specific instructions to try to stay off my foot and I realized that if you go out and about in public with a broken foot you need a better reason than falling out of your parked truck while barefoot. 

I know someone who finished an Ironman triathlon with a broken foot. I'm not complaining. I just need a better story for how I broke mine. 

Particarlarly for the queries from young people. If I expect the growing minds to be thinking expansively then I want to give them a more creative answer to how I broke my foot:

Sky Diving.

Rock climbing. 

Saving the world. 

Having a broken foot and a toddler is not condusive to getting many things done. We have produced a prodigious amount of new artwork during our home period and I am in the process of mailing it out. 

We are making Halloween Decorations. 

Also, I don't have to go to the grocery store. So really, life is pretty good. 

Cheers,
ALJ

Tuesday, August 6, 2013

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