The Darkest Day: Why We Have a Tree Inside

Every year I volunteer to teach a holiday class, bring in treats and make a craft with my daughters class. When my daughter was in pre-school and Kindergarten, the teacher planned a holiday party and all the parents came to school. Back then I volunteered to bring in whatever the teacher asked. My daughter was born in Washington, DC and her small class on Capitol Hill was a little model UN: she had friends who had been to Israel and celebrated Hanuka, African friends who shared Kwanza traditions and the rest of us who just had trees. As she got older, other Mothers went back to work and I kept coming to school as a volunteer every holiday. Now my daughter is in her first year of Middle School and her Social Studies teacher invited me to come and teach a class that is a combination of comparative religion, cultural anthropology and here in North Carolina, a little bit of local pride.

My family is Swedish. As a child my parents put traditional candles on our Christmas tree and my father would tease that as the oldest daughter I had to wear the Saint Lucia crown of greenery with candles on Christmas Eve. We had a Scandinavian brass angel chime that is a small windmill powered by candles that move golden angels in a circle to strike bells. As the candles burn hotter the angels spin faster and make a light magical sound as they ring the little bell. Looking at my angel chimes and candles I realize that these could have been made as long as 3000 years ago by simple metal tinsmith and we know that we have always had fire to light our way in the dark.

My lesson  I tell children is that the whole world celebrates the end of the darkest day by exchanging gifts and lighting candles.

For a Myalgia Mommies many mornings can feel like the beginning of another dark day. As I decorate the house with another tree, I'm up to five, I try not to think of the work it will take to put everything away when the season is over. Much like the seasons, I know that each day will pass and the light will come again.

Instead I think about my ancestors thousands of years ago. A mother in a small house, waiting out two months of darkness (I can't imagine spending two months in darkness with my family, I prefer the equator where it is always warm and sunny!) surrounded by children and extended family. Bringing in a fresh scented pine tree was a stroke of pure genius. I ask the children if they ever go to a car wash...whoever is the first to point out that car air fresheners are all tree shaped is rewarded with a piece of chocolate. The kids and I laugh at the idea of the smell of a little cottage filled with family and pets, no running water in the days before people believed in regular bathing or had washing machines. Bringing a fragrant tree into that home was inspired.

Last year my Grandmother-in-law passed away this time of year. When I first became sick she was hostile to the idea. She would ask pointed questions like "what would a woman in Africa do if she had this disease?" Thinking about the holidays and lighting trees in darkness, I think I would have been the Mother in the corner living much like the others, sometimes relying on a little more help from my family. When the tree came in for the dark winter months, I would try to make them all something nice to thank them for their help throughout the year. To show the kids how timeless crafts are I brought in an ornament made from straw, one of wood and a hand knit stocking. So they also understood how time in the house and too much crafting can lead to some silly ideas, the stocking I brought in has a lovely white design. It was made but a relative who collected her dog fur, spun it into the softest yarn, and knit booties for my daughter.

My father loves to tell the story of a friend who had the hair from his dog knitted into a sweater. They were on a ski lift together in a light snow. Wet dog smells bad even in sweater form.  Like seeking light in the dark, some things are universal.

We make ornaments every year to celebrate that we are about to survive another darkest day. That's a lie. I buy ornaments every year. Pretty glass ornaments made by someone else. In theory I should have close to fifty ornaments by now since I have had a tree with my husband for almost fifteen years and we get our daughter one for each of her twelve years. Did I mention the part about the ornaments being glass? Maybe I should start making some tonight, and back date them. Instead, while we sit around the fire at night I am sending cards to loved ones far and wide. Lighting candles and saying prayers as I think of those whose day is much darker than my own.

My husband lived in India as a child. The India festival of light is Diwali and took place in November. They use a different calendar that I have yet to understand. On Facebook I always forward the wonderful photo of India from space on Diwali where the entire country glitters from the light of millions of candles. I'm sure all of the East Coast is lit brightly with candles and lights tonight.

I still haven't thought of a gift to make. My craft bin is full of potential projects but my ideas are not pouring forth. Finding an object to represent appreciation, affection, gratitude and love is a daunting task. As time runs out before the holiday, I still have more cards to send.

Maybe I will make everyone a candle. I know how to do it, but understand that the process is a messy one. I'm also nervous around candles, I won't say who, but a family member did burn down her bedroom leaving a candle unattended. It wasn't me.

In a few weeks the winter solstice will come and go again. As we have a thousand times before, we will witness the dawn on a new day and know that the darkest day is behind us.

Until then, I used up my energy explaining the universal connection of the season to two classes of 6th graders. Then to empower them and bring the story full circle, I asked if they saw the White House Christmas Tree. It is from North Carolina. I sent them off to their next class with a candy cane, understanding of why they have a tree in their house and a back-up career plan. It turns out that tree farming is a lucrative local industry.

Once again, it's time for more tea.

Cheers.
ALJ

A Gift For Newtown

Since the tragic events of last Friday occurred they have been heavy on my mind and heart.

In other social media forums I have re-posted the blog "I Am Adam Lanza's Mother" from The Huffington Post, The Treatment Advocacy Center, and a group I contribute to: Mental Illness Policy. It is written from the perspective of a mother with a mentally ill child. On my other blog I have a small mental health private case management and consulting company. I have been working with special needs children since I was in high school. I practiced Special Education and Child Advocacy Law for three years and have known many sick children. Before my daughter was born, when I was still a law student, I lost my mother to mental illness and co-authored "I'm Not Sick, I Don't need Help: Helping the Seriously Mentally Ill Accept Treatment." (Vida Press, 2000)

My other blog is my name.

Newtown, CT is a short drive from where my Grandmother lives. On Facebook a neighbor and the mother of one of my daughters friends posted that one of her childhood friends lives in Newtown. She lost her child on Friday. Today I am going to put together a card for the mother and a small gift for her surviving son.

A different neighbor, also a Myalgia Mommie, who suffers from migraines and has a daughter a few months older than mine grew up in Newtown. She and her family haven't been able to watch the news all weekend. She is coming by this afternoon for tea and together we will craft something special.

When I first heard the news I was reminded of the year that my daughter was in Kindergarten in Washington, DC. It was 2005 and a mentally ill man shot and killed two Capitol Police Guards at one of the Senate buildings. My daughters school was two blocks from the Capitol and was immediately put in lock down while the police secured the area.

I spent a wonderful afternoon with my daughter and her classmates. The teachers kept the children calm and I still send cards to all of them. When I heard that some teachers hid the children to protect them, I knew that my daughters elementary teachers would have done the same. This time of year trying to think of the right gift for teachers is always a challenge, knowing teachers as friends, I have been with them when they get to sort through their holiday loot so I want my gift to be one they like.

To Newtown I will send a card and a journal. My daughter has been chatting up a storm about what happened and since she turned seven (the magic age of reason for children) she tells me what she is thinking. Under the age of seven I had a wonderful time weaving stories of a magical reality for her and now she is making a world of her own. If I ever get concerned about the direction her world is taking, I read her latest story. So to the children that are trying to get back into a routine in Newton, the best gift would be art supplies and a journal. Whenever I see cute journals on sale I pick up a few and keep them hidden in my gift drawer.

I'm also lighting candles.

Yesterday a journalist that I like was missing in Syria. Lighting a candle is a form of prayer that I learned growing up Catholic. When I married my Indian husband I converted to Hinduism and lighting candles is how you pray in Eastern religions too.

Last night I wasn't feeling well and laying in bed I thought about the centuries of lighting candles to light the way home from the darkness. It is the season of light.

I'm lighting candles all over my house. Prayers for everyone.

Blessing for a warm and loving holiday.

It's time for another cup of tea.

Cheers,
ALJ

My Magic Number of Cards

Today is 12.1.2.12.

This year the prediction for the Apocalypse comes from the Mayan Calendar and the date is set for the first day of Winter, I'm planning a party. Until then, I'm almost finished with my annual project of holiday cards. I can't say when this began, my daughters will always remember signing cards, much like I do.

We started sending family cards the year we were married. Now I send slightly more cards than I did wedding invitations. I think my holiday traditions are getting out of hand. My older daughter created lovely photo cards on the computer and I used a coupon sent by another Myalgia Mommy on Facebook. Ten cards were free and shipping was free.

This year has been an entertaining process. I misplaced my address book during our move.

I've been cold calling family and friends that haven't heard from me in years or only hear from me if there is a problem. It's an interesting reflection how many times I have said "really, we are all fine, I just need your address!"

One wonderful conversation I had was with my Uncle.

One teen summer I spent with him,  he sent me to sailing camp where I started collecting colored books with official certifications: CPR, lifeguard, red cross, whatever the YMCA camp offered a course in that I was old enough to take.

Eventually I almost followed my Grandmother, the public health nurse, when I obtained a Masters in Public Health. As I have previously mentioned, and the name Myalgia Mommies gives away, I am not able to pass the physical requirements to hold a first responder card anymore. I still do carry most of the supplies. Those of you who follow me on Facebook or Twitter know that for our new car, I now drive a police interceptor model so I have all the equipment to play along. I'm teasing my daughter that I am kinda a second responder.

That is the magic number of holiday cards that we send out. A few more than we would invite to our wedding and about the number that a first responder is responsible for.

I hope you get at least one card in the mail and it makes you smile. One of the many jobs I had to pay my way through college was that I was the mail clerk. I will never forget how happy a real letter or card in the mail made a homesick college freshman. As a mentor and Junior Resident Advisor my Sophmore year, I sometimes made notes and put them in people's boxes when they were having a bad week. In some ways I've always been a mom.

That's so touching I'm going to reward myself with tea and chocolate before I go look up more addresses on the internet. If I call you, I promise, the address book is probably in the box I am using as my nightstand. With the rest of my office supplies.

Happy Holidays.

Cheers,
ALJ

The Desk

This is my workspace.

Cards are on the agenda. I'm almost done!

I love my little tree. So do the cats.

Waiting for a Miracle

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

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

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

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

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

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

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

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

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

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

Happy Holidays,
ALJ 

Frightful Friday for MM, no just cleaning, AGAIN!

I'm listening to Holiday music and cleaning my house. Today is my daughters birthday and over the weekend we will have a fun "Celebration of Sheela." Really, everyday is a celebration of both of my daughters but the month of November is Birthday month for my oldest and tonight we will have a slumber party with two of her closest friends.

As I clean my house I have to carefully modify what I do, I can't lift more than 10 lbs at a time or I will cause soft tissue damage in my back and neck to flare and be in pain for the rest of the day. If I really push myself, I can end up in bed in a few hours. Over the years I have developed a system of my own "reasonable accommodation" around the house so I can still accomplish what I need to without hurting myself (or getting so frustrated that I want to hurt someone else!). Today that meant that before she left for school I made sure that daughter brought her laundry to the machine so I could wash it. A wonderful side bonus of my dis-ability is that my husband has been present in physical therapy sessions when I was strictly forbidden from ever using a vacuum, mop, or broom again. Something about the motion is ergonomically a pain sentence for my body.

I love my spouse. This year we will be married for fifteen years. One year he bought himself a Dyson as his big birthday present. I try to put blinders on so I don't notice how dirty my floors are because I know I can't clean them. Often I want to get out my craft supplies and make a sign for our entryway that says "Disabled Mom: Can't Clean Floors, Please Don't Look Down!"

A blessing or curse I inherited from my father is a good attention to detail. Before I sat down to write this blog I was in the kitchen cleaning. We have a wall of windows. It is a lovely sunny day. Light is flooding the room where white painted cabinets and white appliances are all mocking me. Last night I made spaghetti. I think you can guess where I am going with the rest of this story. As cheerful Holiday music and sunshine fill the room I am noticing more areas that are alarming filthy. The floor is profoundly upsetting.

This morning I woke up with a bad headache, it's bordering on a migraine even as I type but I don't want to take a migraine injection because I didn't remember to refill a secondary medication that I need. I have already taken my break thru pain medication and it didn't help. So I am balancing a headache that is about a 6 or 7 on my pain scale with whatever combination of guilt, shame, pride or purpose drive good mothers to want to have a clean house before a slumber party. Honestly, I wish I remembered what my attention to detail was like when I was turning 12. My daughter doesn't seem to notice that her room or bathroom are dirty. Her friends are really lovely young people and I am picking them up so their mothers won't come to my house to judge, there is a very real possibility that I don't need to clean at all.

Ultimately, having a clean house to me is like all ethical things. I was talking about something to my daughter and was explaining that you always know if you do the right thing. When my house is a mess it upsets me. When I am upset it triggers more fibromyalgia pain. Cleaning also causes fibromyalgia pain. Having a particularly severe case of fibromyalgia is keeping me out of the workforce and preventing me from hiring someone else to clean my house. What a sad vicious circle.

As time passes I find that much of life is filled with these choices of impossible things. I know I have a limit and shouldn't lift over ten pounds. My baby is now fifteen months old and about twenty pounds. Each day there are dozens of times I pick her up for all her little reasons. Precious moments when she needs to be held. I cherish them. Looking at her big sister, I know how fast these baby moments will pass by and whatever pain they may cause will be worth the memory of my darling in my arms. Already she is moving from learning to walk to learning to run and wiggling away. 

So I am taking a break. Making a cup of tea. Writing this blog. Reminding myself how blessed I am that I am able to write a blog and move around the house at all. Briefly flashing back to the days and months when I was completely bed ridden and would have given anything to be able to complain about a dirty kitchen.

Also, in my impatience with the floors, I have decided to clean the bad spots using my socks and some spray cleaning. Our goal in starting this blog was to make a community for all Mommies living with one of the many forms of chronic pain. If you are reading this and have created your own methods of cleaning around your pain, please share them in the comments section. I have never liked cleaning so I don't lend my creative energy to coming up with a better method. I can use help here!

 If you are a Myalgia Mommie and need a note to your spouse that cleaning hurts, let me know, I'll be happy to write them a letter.
Cheers,
ALJ

MM and the Letter D

As the Mother of a toddler I watch Sesame Street. This blog post is sponsored by the letter D.

I could easily write thousands of words on diapers alone. The topic of what kind of diapers a modern mother uses, cloth or disposable is a political statement about how much one cares about the future of the planet. While I was pregnant, I teased my neighbors that I was going to use the compostable diapers but not get a good back yard compost container and just see how long it took them to form a posse and come after me.

To prevent mean comments or starting a long dialogue, I will not tell you what kind of diapers I use.

Yesterday, when I went to change a diaper on my now 14 month old baby we did have a funny exchange:

Me: Did you poop in your pants?

Baby: Shook her head "NO"

Me: Who pooped in your pants?

Baby: Lala (our dog) points to the dog.

Me: Really, the dog pooped in your pants.

Baby: Laughs hysterically.

There are many other big D words that come into being a Myalgia Mommie that could also take up volumes and be great blogs: discipline, dinner, distraction, delivery, debt, divorce, really I could go on all day.

The D word that needs to be spelled with a capital D and sadly affects too many mothers is Depression.

Yesterday I dropped my Mother-in-law off at the train station and our last conversation together was about her Seasonal Affective Disorder (SAD) and my promise to send her full spectrum lights if she doesn't buy herself some by the end of next week. For people who suffer from winter depression, research has shown that using full spectrum light therapy has better outcomes than anti-depressant medications. I have seen the transformative power of a lightbulb in treating seasonal affective disorder firsthand and may just have some sent to my Mother-in-law so I know she will get better. The hardest thing about getting treatment for depression or helping a loved one get treatment for depression is that when you are really depressed you feel so hopeless that you believe nothing will ever be better so why bother with therapy. It's a silly vicious cycle.

As mothers we have our own special form of depression that can have devastating consequences. The period of pregnancy and the first year of life triggers changes in mood that cause depression called Perinatal Mood Disorder or Postpartum Depression. Recent studies have shown that a depressed mother with have lifelong impact on the brain development of her child. So, if one of your Myalgia Mommie friends is having more than the normal level of "baby blues" please help them help themselves, not just for their sake but for the sake of the baby. To me this point should be repeated thousands of times. A depressed mother doesn't interact with her baby, the babies brain doesn't grow, the baby is a measurable amount less intelligent when they grow up. What better new baby gift for a friend than helping her out of depression? It makes you the "Fairy Godmother" that insures her child will get a better score on tests and possibly go onto a better future. Wow! That is an amazing gift. 

I am incredibly fortunate to live in Chapel Hill where the University of North Carolina has the first Perinatal Mood Disorders in-patient ward. There are dedicated beds and a department of trained nurses who specialize in mothers with postpartum depression and support services for the rest of the family. The woman who runs the clinic speaks all over the country and I hope in years to come the program expands to other hospitals. Until then, I do know that anti-depressants are safe and effective in breastfeeding despite some commercials I have seen for class actions settlements. As I understand it, a small amount of prozac, xanax and some of our oldest anti-depressants will go into the milk but have no effects on the baby. Since we know that a depressed mother does have real and serious effects on the baby, it strikes me as a no brainer. Also, and this is a joke, a tiny amount of prozac in the milk would just make a baby happy, right?

As we head into the Holiday season filled with all kinds of stress and pressure, I have to throw out one more thing about Depression. Please remind your friends, Myalgia Mommies or not, that alcohol is a depressant! My days of being a drinker are behind me, alcohol interferes with my medication. I am always amazed by people who get sad at the holidays and think that getting really drunk will make them feel better. It won't. Unless you drink too much Champagne.

Oh no, a Diaper!

Cheers,
ALJ

MM and Thankfulness

I'm writing this post from my smartphone. My mother-in-law arrived late last night and is sleeping in my office. So please be kind to my typos.

The blog has not been updated in a few weeks because I had a minor surgery. Thankful for modern medicine and my wonderful Myalgia Mommie co-founder and friend who came over and took excellent care of me while I recovered.

Also very thankful that I am at a point in my life where I no longer need routine surgery or visits to the Doctor to control my chronic pain. The biggest hurdle to my surgery occurred in the pre-op phase when they tried to put a line in my arm for the sedative.

Even now I have a blood draw every 3 months to check various blood levels. Somehow even living on a beach, on the equator I still always have a Vitamin D deficiency. If my white blood count is ever normal I will be thrilled because that will mean that I am cured and can turn this blog over to someone else!

When the surgeon checked the line and the bag of sedative, it wasn't going in. As with so many people who suffer from chronic pain, I look great! Sadly, I have scar tissue in my arms around my veins from having blood taken so often. Needless to say, I panicked. The procedure was to have teeth pulled, and I am really afraid of additional pain. The sedative found its way into my system, the oral surgeon removed my broken and infected teeth (long complicated story) and I am mostly better.

When he called the next day to check on me I told the surgeon that my greatest concern was that the operation would trigger a migraine which would be much greater pain than having teeth pulled. It didn't. Now I have company and am getting ready for the holidays.

This year I am Thankful that I am not responsible for being "The Hostess" although the many years that I opened my home to a huge party gave me amazing stories and memories. My personality is very "type A" and I would spend at least a week making sure everything was perfect. Getting new recipes, arraigning flowers, picking the perfect wine and decorating my house. So, I do miss it, but my family prefers the more relaxed version of me.

We are taking the girls and driving to see their Great Aunt in the mountains a few hours away. It's just far enough that we are leaving a few days early and staying in a hotel.

Almost a decade ago, when I was very sick, I read a Blog about traveling with a chronic illness. I think it was Chronic Babe. The advice was to wear comfortable clothes, bring healthy snacks, stop every two hours and have fun. This trip I will have my 11 year old, my baby, and my Mother-in-Law (who also has health problems) traveling in the car with me. Any Mommy Blog will give you the same advice for traveling with children. In the past, we have taken my Grandmother out of her nursing home for holidays and the instructions are the same. In fact, I had to read the Drivers Manual to take the test and get a new liscense; it said when on a trip plan to stop and move around every two hours. Writing this blog I often feel like any advice I would have is obvious and written in numerous other places.

I feel very blessed and thankful for everything in my life. At the same time, I will not list it here because no one likes smugness.

Thank you for reading and please feel free to share what you are thankful for this year.

Cheers and Happy Thanksgiving,
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

MM and Cleaning with Bleach

In my Twitter feed I am calling today Toxic Thursday.

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

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

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

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

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

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

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

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

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

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

Cheers,
ALJ