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


Thursday, May 30, 2013

The MM Garden Delivers

This time last year I was moving into my current home and began what little gardening I do at the urging of CVW, the other original MM.

We were both limited by time and energy to the amount of gardening we were willing to do but urged each other into planting patio containers.

At my house the gardening spread around the patio and I had to create a criteria for what flowers I could plant. My baby ate everything. My options were a summer of panic and poison control or an all edible flower garden. We have marigolds.

I also grow a few kitchen herbs and really whatever strikes our fancy (and is edible, we have pets too) when we are at the garden store.

Compared to real gardeners, I am somewhere below a beginner. However, my gardening gives me some relaxing time and a small hobby so I'm claiming it. I cherish my small collection of pots.

It's already warming up and the garden has given me a great gift: water.

I don't like to drink water.

I pretend that I really enjoy it and have been trying to convince myself that nothing is as refreshing as a cool glass of water for years. I prefer coffee.

In the summer my body needs water, we all do, without any harmful additives or extra sugar. So do the kids.

A yoga instructor posted on Facebook that she was ready for a heat wave with herb infused water from her garden. Inspired, I looked around the patio and found mint.

It works!

Since there are few new ideas, if you search "mint infused water" there are recipes, photos and even a video.

Directions: pull some mint leaves off the plant. Put the mint in a pitcher of water. Leave in fridge overnight.

This summer I'm drinking more water, as long as the mint holds up. At least I will try to because I know when headaches come the first question you ask is if you have been drinking enough water.

As I Mom and a migraine sufferer, I know they are dehydrated and I will usually have to think about my answer.

So here's a minty toast wishing you a healthy, hydrated summer. If you have a favorite easy thing to add to water please share in the comments.

Cheers,
ALJ

Thursday, May 9, 2013

Hiding in the Bathroom

Last night I had a mello dramatic confrontation with my tween and a brilliant new idea.

My husband was working late and I found myself seated across from two girls over my usual first dinner of the night of cheese pasta and dark, you-will-eat-it, steamed, veggies. The baby and I noticed that my daughter asked to go to the bathroom twice during dinner and seemed to be eating quickly.

I asked her if she felt alright. Concerned, I remembered that she said her head hurt when she came home. She said she was fine. Seemed normal. In fact my daughter had a sparkle in her eye.

As soon as she finished eating and cleared her plate I asked her to do something and she replied that she needed to go use the bathroom first.

A few minutes later even the baby was suspicious.

We knocked on the bathroom door to find her playing on Instagram with her friends.

She told me that some of her friends moms go in the bathroom to use the phone all the time. They talk about it at school.

She lost her phone rights for a few days.

I may have gained a sanctuary. (Also wish these other moms had shared this tip.)

One of the characteristics of Mothers I have known is not knowing how to ask for help. Or take a moment for themselves.

As a mother with a pain disorder if I don't find a way to prioritize some self care I won't be able to care for them. I need to own this and take time, not have to hide in the bathroom.

I just need to find more time.

I may be writing this blog from my bathroom floor.

Cheers,
ALJ

Tuesday, April 30, 2013

The Happy Fun Sick Person

Last week I was hit by a rogue flare and couldn't move from my chair.

I feel obligated to be a happy fun sick person. I don't want my daughter to grow up and have memories of her mother the wilting invalid always complaining and talking about her latest symptom.

Also, as I spend time with more mothers I find that it is not just me with a headache and some of us are stronger than others. (Also some do more for their kids than others).

So when I have days where I am melting into my chair I find ways to be happy and fun for my girls. This chronic illness can't color their childhoods anything but richer because they had my fuller attention.

Today is misty and rainy and that happy fun way is going to include Fairies.

Last week the birdhouse we built a year ago fell off the tree. The glue had worn away. I'm up cycling it into a Fairy house with the baby later today. Or so goes my ambition. I know I'm not leaving the house until the afternoon riding lesson. If I conserve my energy for one big push we can take my tween out to ride her pony and the baby and I will walk around the farm. We can also unload the 30 ft of pine shavings that I'm driving around with. I feel like I'm in the horse mafia. I have enough pine shavings to make a fort!

At the feed store this morning I initially bought three bushels of pine, Ms. Daisy, my retired K-9 police car has an amazing trunk and is filled with a stroller and six bushels of pine shavings with room to spare. If police departments have to sell old cars to raise money, at least they make great family vehicles. Also, all the guys were impressed by the rims. I have no idea why, since they are black and not shiny.

Also, I bought myself a plant. Gardening is a hobby I reserve for myself that everyone appreciates having around them. At some point today, or maybe this evening, I'll pot my plant and watch it bloom, while I smile and encourage and gather strength to be the happy fun Mom who is not going to complain about her symptoms.