Wednesday, December 19, 2012

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

Tuesday, December 18, 2012

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


Wednesday, December 12, 2012

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.



Thursday, December 6, 2012

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 

Friday, November 30, 2012

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

Tuesday, November 27, 2012

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




Tuesday, November 20, 2012

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

Friday, November 2, 2012

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







Thursday, November 1, 2012

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

Tuesday, October 30, 2012

Weathering the Storm

This blog is called "Myalgia Mommies" to be as inclusive as possible for all mothers living with some form of chronic pain. The more mommies I meet and the older I get, I am beginning to believe that most of us are "Myalgia Mommies".

I decided to start this on-line community because I have a Masters in Public Health from Johns Hopkins School of Public Health, so I am a pretend doctor and keep up on all the reading anyway. Also, I have suffered migraines since I was 5 and was diagnosed (after over 2 years of tests and visiting NIH to determine mystery illness) with a very severe case of Fibromyalgia in 2001. In the decade that I was dealing with my chronic pain, waiting for a good drug to be invented, I never found an on-line community that was positive support and included the challenges of parenting. 


I love Chronic Babe, but she gets massages and makes martinis. I have kids and chaperone dances, drive all over, plan lessons, play dates, sleepovers, etc. Mom stuff and cool no kids stuff is very different. 

This post is about the huge storm Sandy, hitting the East Coast today. 


I am mostly a Twitter person and am calling it Tea Tuesday! 

Mommies who have kids home from school, make some tea, get some craft projects and have a great day. I can't go outside today unless I am wearing about ten layers of clothes. For some reason I flare when I get cold, and it is 40 degrees outside. So, I'm building a fire, making tea and blogging. Later we will bake some cookies, sing some songs, maybe do a puzzle...

The latest meeting of the Fibromyalgia research group said that daily 30 minutes of exercise helps, but the best kind for me and others with various rheumatoid  problems is a warm pool and water exercise or swimming. See previous post, my baby is in a cast so no pool for us!

I don't know how some of you Myalgia Mommies live in cold places. Feel free to leave tips in the comments section. My aunt is a Myalgia Mommie and lives Up North. Her myalgia is a fused disk in her lower back that can't be operated on. The funny thing about my Aunt is that if the temp gets above 70, she gets really upset. She can't handle the heat. I love her to pieces, but if I go below 65 my whole body hurts. We rarely see each other, but we talk on the phone. We both have Scotties. 



I hope you all have power to read this blog and weathered the storm. We only recently moved back to the mainland from the USVI (great warm place, gets several hurricanes each year!) so I am familiar with hurricanes. My myalgia has a hard limit that I can't lift over 10 pounds or my back will go out. I've always relied on the kindness of friends or yelling at hubby to put up our storm shutters. 


If you and your kids are fine, please go check on an elderly or disabled neighbor. 


Also, if you would like daily silly tips from me, you can follow me on Twitter at IslandAnnaLand. 


Stay Warm and Dry!


Cheers, 

ALJ

Tuesday, October 16, 2012

Mommie Blogger FAIL and Insight!

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


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

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

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

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

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

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

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

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

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

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

Thanks.
Anna-Lisa

Wednesday, October 10, 2012

World Mental Health Day

Today, October 10th, is World Mental Health Day. The World Health Organization has identified Depression as the focus for this year. Globally, depression is the second greatest burden of disease affecting 350 million people worldwide.

For a Myalgia Mommie depression is a little black dog that is always nipping at our heels. I have found that we have an amazing weapon against it: our children.

True clinical depression takes clinical intervention and is so overwhelming that when an individual is in the throws of the disease, even our darling children can't reach through. This post is about "Mental Wellness," a crucial part of life that we do everyday and that keeps us going as Myalgia Mommies.

Most of the activities of finding a daily moment of beauty, engaging in an activity that gives us joy and finding pleasure in simple acts, we have adopted as a way of life. Studies have shown, and health professionals call this, mental wellness.

Recent research into my myalgia, "fibromyalgia," has shown that medication alone will not diminish symptoms and a holistic approach including these lifestyle changes is needed to address symptoms.

My darling baby is waking up. She is my daily joy and the reason this blog has so few posts.

I hope all you Myalgia Mommies have a chance to sit down with a cup of tea today, smile to yourself, congratulate yourself for mindful self-care, and bask in the beauty that you are. My tea party will be me and my baby, and we will toast you.

If it is possible to gain strength and support knowing that you are part of a greater web of women quietly trying to live with grace through a similar circumstance, then this blog has served it's purpose.

Please share a picture or short description of your cup of tea.

Hopefully today we will put up some pumpkin lights and have a photo worthy of sharing.

XO
ALJ

Monday, August 27, 2012

A Fashionable Myalgia Mommie

This weekend we met Fleming Samuels, owner of Fleming Clothing and fellow Myalgia Mommie. We were blown away by both her clothing designs and her story. Her clothes are made from 100% organic cotton and are produced locally right here in the Triangle area of NC. The fabrics are vibrant and fun, and you can design your own outfits. Fleming Clothing will ship them right to your door. How easy is that! Even the website is colorful and fun!

In the coming weeks, we are hoping (fingers crossed) that Fleming can find some time to write a guest blog for us here at Myalgia Mommies! We look forward to hearing from her soon! And we're sure she would love to hear from you, so stop by her website and tell her the Myalgia Mommies sent you!

Sunday, August 26, 2012

Civil Union Mediation

Feel free to use this outline. If it helps you, send me $. If you don't have any extra $ use it with my blessing.

1. Custody
1.a. Mother primary custody
1.a.1. Week on/ week off not good for well being of children.
1.a.1.a. Children need a primary residence Mon.-Fri. For emotional growth
1.a.1.b. mother will reasonably accommodate all visitation requests
1.a.1.c. Weekends and holidays TBD
2. Healthcare
2.a. Mother will insure child.
2.a.1. Responsible for all well child pediatric visits.
2.a.2 F will be informed/consulted when major medical issues arise.
2.a.3. F will reimburse M for 50% of all HC expenses.
3. School
3.a. Child will attend Public School
3.b. M will notify F of all school events and conferences
3.c. Until age of public school, a ore-K program will be used.
3.c.1. Choice of Pre-k is Montessori method.
3.c.1.a. F will pay 50% of school fees.
4. Child Support
4.a. F will pay 30% of income or $1k/month
5. Mutual assets
5.a. House to M (she owns it)
5.b. debt
5.b.1 M will provide court w accounting of mutual debt. F to pay 50% of all outstanding mutual debt.
5.c. Other assets
5.c.1. Parties will retain all assets they brought to marriage.

6. Fees
6.a. If Father wishes to challenge the above agreement he will be responsible for attorney and court fees incurred in dispute.

7. Amendments
7.a. This agreement can be amended by mutual agreement of M & F.

The End

Divorce Mediation is easy!
Xo
ALJ

MM Health Alert

Hi fellow Myalgia Mommies, we are under a few public health red alerts that I wanted to share with you.

On the East Coast and South there is a nasty West Nile Virus going around (in St. Croix our mosquito bourn disease is Dengue Fever, 1in 3 die, others call it the "bone break fever. The symptoms basically are the same for my fibromyalgia so I was not sympathetic to nurses who had it and whined about being in pain!)

Please cover yourself and your kids in bug spray. The West Nile is getting into a death count.

The second warning applies to everyone who comes into contact with pigs. Swine flu is going around. You can get an H1N1 vaccine ordered thru your pharmacy or primary care doctor. Dying from Swine Flu is just silly. I'm just avoiding pigs (except in the form of meat!) but my kid got the vaccine in 2010.

Third warning, this is local to NC, we have had to put several horses, a few dozen dogs and more to sleep for rabies. Even the baby is now current for rabies. The treatment is painful if you get to the point where you are foaming at the mouth, they put you in a medically induced coma.

Lately I have been working in West Coast time zone, living with a baby on the East Coast. I need more sleep.

Finally, please don't start any fires.

This is the end of Myalgia Mommies public health warnings for Labor Day Weekend.

Xo
ALJ
JD-MPH

Saturday, August 25, 2012

MM support each other, with clothes!

Today at University Mall Fleming of Fleming Clothing is having her first warehouse sale with a Migraine!

She is awesome! She designs the clothes, has the all organic adorable prints sewn in her NC factory. Today she is selling each left over item for $5 so come get ur kids adorable clothes!

Xo
ALJ

Monday, August 20, 2012

Deanna's Project: Home, but is it really?

Deanna's Project: Home, but is it really?: I returned home today, but besides my beloved animals it doesn't feel like home. My home is where my children are. And the house is void of ...

Wednesday, August 15, 2012

Daily List, revised

Todays List

1. Make tea
1.a Drink at least 4 cups
1.a.1 Note from throat to brain
1.a.1.a Hey we are swollen over here!
1.a.1.b You are losing your voice.
1.a.1.c Do you really want to get strep?
1.a.2. Reply from Brain
1.a.2.a.I'm drinking the tea. Shut it!
2. Finish everything from yesterday's list.
2.a. Re-read yesterdays list
3. Work
4. Pack for beach
5. Use the word #Kafkaesque in every tweet I send today.
6. Try to stop being so Kafkaesqe.
6.a. We all read "The Trial"
6.a.1 We all relive "The Trial" several times a day
6.a.1.a remember to follow up on 8 daily trials
6.a.1.b. only accept 2 new trials
6.a.1.b.1 this is tiring work!
7. Try to blow up the internet/my phone/and/or save the world!


Please remind people to take the stupid physics poll so we know which ones are stupid.
Please ask people to stop blowing up my phone. I habs a sored throat.



The Daily List

1. Make tea
1.a Drink at least 4 cups
1.a.1 Note from throat to brain
1.a.1.a Hey we are swollen over here!
1.a.1.b You are losing your voice.
1.a.1.c Do you really want to get strep?
1.a.2. Reply from Brain
1.a.2.a.I'm drinking the tea. Shut it!
2. Finish everything from yesterday's list.
2.a. Re-read yesterdays list
3. Work
4. Pack for beach
5. Use the work #Kafkaesque in every tweet I send today.
6. Try to stop being so Kafkaesqe.
6.a. We all read "The Trial"
6.a.1 We all relive "The Trial" several times a day
6.a.1.a remember to follow up on 8 daily trials
6.a.1.b. only accept 2 new trials
6.a.1.b.1 this is tiring work!
7. Try to blow up the internet/my phone/and/or save the world!

Please remind people to take the stupid physics poll so we know which ones are stupid.

Oh I could go on for days.

But I'm going to the beach.

GotKafka?

Tuesday, August 14, 2012

The Daily List

The Office is open. Please stop calling me. 

Down another rabbit hole. 

If I am working with a client, I refer to the project as being down another rabbit hole. If you call me and I keep saying down another rabbit hole it means that I am working on someone else's dime and feel like I am being rude to them. I am ridiculously ethical. I want to teach ethics!

This is my to do list. 

1. Write blog
1.a How many blogs?
1.a.1 Can I post the same thing on all of my blogs?
1.a.2 Will anyone notice and/or care?
2. SLR Vaccinations
2.a. is D-TAP up to date?
2.a.1 Way to go hippie parent who brought pertussis to camp!
2.a.1.a Sheela makes me pay her to get shots. 
2.a.1.a.1 So her vaccine record is in hard copy in the form of webkins. 
2.b What is going on with these pigs this year?
2.b.1 We did the CDC HINI Program on STX in 2010 with 6 mo. booster.
2.b.2 Is it safe to go to the NC State Fair this year?
2.b.2.a Is this H1N2 or are we good?
2.b.2.b Will some kid give my new baby a disease from a pig?
2.b.2.c STOP TOUCHING PIGS!!!!!!
2.b.2.c.1 You have to pay me to touch a pig. I am immune suppressed. 
3.a. Contact SS School
3.a.1 Figure out how to email Counselor her records.
3.a.1.a Remind Sheela that she is good at math. I have proof. 
4.a. MER swim class
4.b.1 Call Parks and Rec
4.b.2. Pick a class
4.b.3. Sign-up
4.b.4. Remember to show up!
5. Insert Marx reference here for highbrow/well read crowd
6. Figure out a way to get paid.
6.a.1 Stop taking Pro-Bono Cases
6.a.1.a I told you on twitter that we are operating at 50% pro-bono
7. Wait for verdict to come in
7.a. He will call as soon as the judge reads it
7.a.1 Go USA DOJ!
8. Pack for beach
8.a. Do I need a boat at this beach?
9. Clean House
10.Clean car
11. Pay Debts
12.Laundry
13.Blog


Did anyone else notice how we just went in a big circle?
Down Another Rabbit Hole!
ALJ

ps Plan Mimi's B-Day Party
Note to self: Where is Meme

Sunday, August 12, 2012

Sorry

Hi Myalgia Mommies.

Sorry I haven't been sharing my funny stories with you. Life is good. Follow me on twitter at @islandannaland. It is where I am queen.

Really funny stuff happens to me!

Like I wrote up a page to use for my LLC so I can bill people. The I get to join the working myalgia mommies club (which is HUGE!).

So read my Letter to My Daughters

Read my letter to you.

It's all on blogger at One Dead Mother.

I know the name is kinda tacky, but I was really tired.
(see purpose of this blog. I need more than the 5 hours of sleep I am getting. Side effects include excessive usage of social media to say nothing!)

So, please, if you are surfing, check me out.

But not like that, my husband is my hero.

Just like Ayn Rand.

Read more.

Love
ALJ

Saturday, August 11, 2012

Letter to My Daughters

This letter is to my Daughters:

1. This is where Mommy works. It is a really sad place.
2. Big Sissy is on the phone with me now. Our 11 year old daughter is at Polox Made Simple Camp with her Pony Dreamer. It is raining. Sheela is camping. Sheela, you want to come home from PMS Camp because of Mother Nature. You don't get the joke because you are only 11. Please stop reading Mommies blogs. They are sadder than PMS in the rain.
3. Mimi, in order for me to write this, you are being babysat by Blowfeld, our white german dwarf hamster. If he gives you the plaugue, well, that's daycare for you!
4. Mommy loves you.
5. Mommies Mommy died of sadness. It is Mommy's job to make sure other Mommies don't ever die of sadness. We know how to detect, treat, prevent and in most cases cure sadness.
6. This is really sad. Worse than Beaches. You should stop reading now.
7. Seriously, get off the computer.
8. I have set the parental controls so you can only have 2 hours a day.
9. Do your homework.
10. Go play on horse.
11. Stop reading about my day job.
12. It's really sad.
13. Times up!

Friday, August 10, 2012

Why We Are Crying

Why We Are Crying

Why We Are Crying

Why We Are Crying

Deanna tried mediation. Still did nothing wrong.

Has not had custody of her daughter in over 30 days.

It's like prayer chain time.

Light a candle already!

Myalgia Mommies is a Team Sport

Myalgia Mommies is a Team Sport

Luckily there are many of us. Myalgia means pain. Most Mothers either suffer from some form of chronic pain or take care of someone in chronic pain so they are a Myalgia Mommie by proxy.

The ? is how big is the team? That remains to be determined.

Please leave response below for equipment manager!

Deanna's Awesome Head Shot

Deanna looks pretty. I would totally skype with her.

Me, I'm not wearing make-up or pants!

Cheers,
ALJ

Free advice!

Deannas Mediation and Case Management Meeting was set for 10 am. I am on the clock on the Deanna Doolittle project, so please read her blog and wish us luck!

Deanna Got Her Own Page

That's right, we figured out how to use blogger. Almost.

Myalgia mommies really is a team sport and Mimi is screaming in her crib because my child care FAILED (you know who you are and I still  love you!)

Deanna and I are about to go to the mediation. I feel rude being a mediator in a mediation. Or at least excessive.

Please follow Deanna at Deanna Doolittle. Right here on blogger.

And calm the baby.

She is upsetting my little black dog, Lala!

Thursday, August 9, 2012

Why ALJ Is A Bad Case Manager

Why ALJ Is A Bad Case Manager

Blogging from Home?

Are you kidding me?

I don't even have a desk in this house. I am sharing a desk with everyone. Time to buy some furniture!

Somehow over the course of the week acting as a case manager for the "Deanna Doolittle Project" let out the secret that I had come out of retirement.

I can only handle 10 cases at once....nearing my limit!

So, tomorrow at 8 am I have child care set up so I can be in the call to make a treatment plan. Thats the easiest thing to write if you have done all the reading.

Keeping up with the reading is the other half.

Showing up is the first.

Phones count!

TTYL

XO

ALJ

Deanna's Tear Jerker

This blog is seriously down. Deanna Doolittle made me cry this morning with a moving blog she wrote. She sent it to me on facebook private message. I have no idea how to post it.

We need a myalgia mommies administrator who can keep up with multiple social media platforms!!

Sorry!

Hope you are on Facebook?

Cheers,
ALJ

Myalgia Mommies is a Team Sport

Myalgia Mommies are not good editors.



Sunday, August 5, 2012

Message from Deanna

myalgiamommiesblogspot.com

Well, that blog has started somewhat of a life of its own and the women who are part of it all have their personal stories, including me. My friend, who is simply wonderful, has offered to do some documentary photos and then once I reunited with my children is gracious enough to go a family photo shoot. Karen Gilbrande (i i am pretty sure that i misspelled that and i ap
ologize) you are truly an amazing person with a huge heart and i can't thank you enough. But, like all the other fantastic people who have rallied around me, i promise you will get a surprise from me.

As for the blog, please keep checking in because we update constantly, and it will also give you information on the book that we are working on. I can't believe how many people across the world who have been moved by it, and they are so thankful because for the first time for many of them, they can get help, someone will hear them and they don't feel so alone. I am truly thankful for all the readers, people that comment and especially to my sister/friend Anba-Lisa who started the blog. So tell your friends, co-workers, family even strangers about us and how we can help or they can help us by becoming part of this fantastic blogging community. Much love and light to you all, and thank you to all my friend on Facebook who have called or messaged me, and for getting the word out about this amazing blog. Much love!





Why ALJ Is A Bad Case Manager

During the three years that I lived on STX, I managed my chronic pain with the right combination of preventative meds and the occasional migraine injection (more about that to come...) which I was happy with. Then I was blessed with my second child and needed to move to where they had all the specialists a case like mine needed (found a great Neurologist who is a Myalgia Mommie with a full plate, she also suffers from migraines and has a two-year old, the test was simple- what will not pass thru breastmilk?) including the only perinatal inpatient mood disorder ward (more about PPD in a paper I wrote somewhere else).

I will really need to edit that sentence.

When bad things happen to good people in my life, I get sad. Then I try to fix them (I think that is the MPH "problem solving" thing again.) When I try to fix things I get a migraine. If it doesn't go away with medications, after about 5 days I would snap. I had to induce my new baby at 39 weeks because I had a blinding migraine for 2 weeks and there was nothing safe (that I wanted to expose Mimi to) that I could take. Ditto to breastmilk.

Another horribly written sentence.

Myalgia Mommies are any woman who lives with a form of chronic pain. I was thinking we could have 50 shades of committees for the number of mothers who live with a chronic medical condition. Kids are really hard to raise correctly, and we are doing it.

Winning!

If you are a myalgia mommie and want to share your story and your advice with this group, please enter a submission.

Also please form a submission review committee because we want to be nice to everyone. Only good people allowed in the club.

As soon as I can break this multi day migraine I am going to post my CV, I am very sensitive and insecure. Often I feel like people don't take me seriously.

This Deanna Doolittle thing has brought me out of retirement. I am now about to put on my big expert witness shoes that say "sorry, but you are a boy and can't walk in these, they make my calves look good so any discomfort is worth it." Don't worry, someone else is the stylist on the project!

I am really looking forward to going to CO to be with Deanna. Mostly because I get to hug her in person. Also we are getting a spa day, hair stylist, photo shoot, Kale chips and other amazing friends. Is it selfish of me to go and help her?

It is now past my bedtime and I have missed too many trains of thought lately.

Sweet dreams.

Cheers,
ALJ


Friday, August 3, 2012

Why We Are Crying


Deanna had her third UA today and eye check to prove that she is not a "drug addict"!!

Yesterday was a supervised visit with baby Charlotte, who is 3 and has been in foster care since July 6.

At the end of the visit, the social worker had to take her away again.

Charlotte began to cry and reach out for her mother. She was crying, "Mommy, please let me come home! Mommy, I need you!"

This situation is being sorted out. I fear that any Myalgia Mommie going through a conflict (in this case divorce) could lose custody of her children.

As a Myalgia Mommie who suffers from chronic migraines, when things like this happen to good people (in this case a friend of twenty years) I have to put on my law school hat and help sort out an ignorant Social Worker. WAIT. There are excellent Social Workers in our world, probably some that are also Myalgia Mommies.

Please leave a comment of support for Deanna. She misses her kids. I would have a complete breakdown in her situation and believe she is navigating the system gracefully. 
ReplyDelete

Thursday, August 2, 2012

Our Deanna Doolittle Project- Help Needed!!

This blog was started as a forum for Mommies who suffer from a Chronic Pain condition but still manage to do it all (or most of it depending on the day!).

This post and a separate website will now be a quick test to see how many of us there are and how much we can overcome when crisis strikes. We need to help my sisterfriend and I know that many of you will be able to help her with words of support. She really needs it now. 

Deanna Doolittle is an amazing woman who I have known since we where both adolescents.

Over the last 20 years we have both evolved in different directions but have maintained our connection as "sisterfriends." Sadly one of the many ways that we traveled a similar path is that Deanna and I both suffer from extreme chronic pain.  In spite of this we both consider motherhood to be our highest and most rewarding calling. 

In a future post I will explore the number of mothers who also suffer from chronic pain. I believe that we are a large sisterhood.

Deanna is the mother of five children, two grown sons and three beautiful little girls.  The youngest is a 3 year old ray of sunshine.  Like so many of us Deanna's world is full of little girls, play-dates, parent teacher conferences, pediatric well visits and obscene amounts of laundry.  As with so many of the amazing woman I know I could write chapters about what a loving mother Deanna is, that too will come later.

Deanna is going through a crisis that could,  theoretically, happen to any mother living with chronic pain. The entire medical history is now public record, suffice to say Deanna has Polycystic Ovarian Syndrome, pelvic floor tension myalgia (the triggering event also caused PTSD, she suffered anal and vaginal trauma two weeks before her 16th birthday), migraines, and has had 15 operations; 13 anal surgeries, 3 colonoscopies, a lost baby, and she will continue to need operations to address anal fussures and anal fistulas. The latest operation was a hysterectomy to correct severe endometriosis.

I need to hug her right now! There is a long list of other problems, IBS, anxiety and things that come with illness.

Last year Deanna returned to school and completed a degree in Massage Therapy. She graduated (and passed certification) with flying colors. During this period she had an abcess burst during a class and had to be driven home then to her specialist. Also during this period, she filed for a divorce.

Deanna takes no narcotic or pain medicine. She manages her condition with muscle relaxants that slur her speech but allow her to function and lead a very full life.

On July 5, Deanna was in extreme distress having suffered days of bloody loose stools (another chronic condition on her list) and in the afternoon took a shower and a muscle relaxant before a nap with the baby. In the manner of a child, her 8 year old wanted to go outside and to the park but Mommy needed to rest. When Deanna fell asleep, in a room with a baby gate, her daughter decided to let the baby out and cause trouble. She went to the neighbors and said her "pill popping mother" (as her father and step-mother teach her) was passed out and she couldn't wake her up. At the neighbors house DHS was called for neglect. Deanna heard the neighbors at the front door and woke to great them. The next day a social worker came to her "messy" house and noted that Deanna was slurring her words. DEANNAS CHILDREN WERE REMOVED FROM HER HOME.

The baby remains in foster care. Deanna has given all medical records, prescriptions and many urine samples to DHS. We are working on a plan to address her daughter's anger and to teach her that "Mommy has to take this medicine for a reason."

We are getting everything sorted out. A date for trial has been set. This scenario could be enacted on any Myalgia Mommies going through a divorce. The truth will always come out, in this case the truth is she has been very wronged by a system that doesn't understand chronic pain.

I am setting up the Deanna Doolittle Project on a separate website where we will be collaborating on this case and possibly a book.

Please help.

Thank you,
Anna-Lisa Johanson JD-MPH

Thursday, May 24, 2012

Tuesday, May 15, 2012

Dr. Hashimoto, I Presume

Finally... this snake of pain that's been coiled around my back and joints and causing my myalgia for the past five months has a name. And the diagnosis is... <drum roll, please>... Hashimoto's Disease. Yes, I know. It sounds more like a poorly dubbed Godzilla movie than an actually affliction, but this little bugger causes a lot of problems.

Hashimoto's Disease is the leading cause of hypothyroidism in the good ole US of A. It's an auto-immune disease that causes the body's immune system to see the thyroid gland as an invader and attack it with a full arsenal of AMDs (Antibodies of Mass Destruction). There is no known cure for Hashimoto's Disease, but in the long list of disease possibilities that my string of doctors considered, it is certainly one of the most benign. That doesn't mean that it's symptoms - fatigue, depression, weight gain, cold intolerance, constipation, muscle cramps, decreased concentration, and aches and pains - don't suck. 'Cause I'm here to tell you that they do. And I think most Myalgia Mommies would agree with me.

Luckily, I've been on the levothyroxine doctors prescribe for the hypothyroidism caused by damage to my thyroid for the past two years. I also have a pretty severe Vitamin D deficiency, but 50,000 units a week should knock that out in no time. I'm still waiting for the back pain to decrease or (hopefully) disappear, but the aches and pains in my knees and hips have improved ten-fold. I feel better than I have in... well... five months, and I've managed to lose a tiny bit of the weight that has crept up on me over the years. Maybe I'll be back to exercising at full strength someday soon.

I feel very thankful to have finally received a diagnosis. It's such a relief to have a known enemy to fight. Though I will have to be on medication for the rest of my life and closely monitor my levels, I know it could have been so much worse.

I still have good days and bad days. I spent most of yesterday curled up in bed because the back pain returned with a vengeance, but now that I can name my demon, I know I can handle it. Dr. Hakaru Hashimoto, if you were alive today, I would kiss you. –cvw

Monday, April 23, 2012

Anna-Lisa Finally Speaks

As the Myalgia Mommy who hasn't posted yet because I am too busy dealing with my beautiful 11 year old and her pony and my amazing little 7 month baby who daily fill my life with love, I fully agree with the letter we received from a reader. Having kids rocks!

I have had severe, disabling fibromyalgia since about 1999, the year before my oldest daughter was born. I also suffer from chronic daily migraines that I started getting in Kindergarden. I have spent months in bed and gone as far as Kerala, India to find a good treatment.

It's the sleep deprivation and nursing that is killing me these days. I'm only able to take B, D, cal/mag and prenatal vitamins because I am nursing. Every few weeks I get broken down and have to take migraine meds and pump and dump the milk. Both the baby and Daddy hate those days!

Some days lifting the 30 pound carseat onto the stroller kills me. But I'm having fun.

This blog is about advice, like go to the drive thru zoo! Hours of amazing fun with very little heavy lifting!

Also, when the kids aren't in the car, it's fun - and therapeutic for me - to bitch a little!

Cheers,
Anna-Lisa

Inbox: A Letter from A Reader

Editorial Note: We received the following email from a reader, and after asking her permission, the Myalgia Mommies would like to share it with you because she eloquently sums up what we were trying to say. This author is another Myalgia Mommy who is totally rocking it!


Blogging, no matter how innocuous it seems the topic may be, is bound to ruffle some feathers, right?  Someone is always bound to disagree. I hope that you can read this with an open mind. Knowing me, I'll probably be a bit blunt, but please know I'm not trying to be mean or offensive. And I just got your guard up, didn't I?  hehehee

I've had a (rare, but specialist verified many times over) dual diagnosis of Fibromyalgia and Chronic Fatigue Syndrome (among other things) since 1996, when I was just 20 years old. I got sick two weeks after I married my first husband (there's the trigger - huge mistake). I was one of the first in the country to receive Social Security Disability benefits for Chronic Fatigue Syndrome (though I have since asked that they discontinue those benefits, against medical recommendations... long story, and the benefits have stopped). I'm the mother to two boys, ages 5 1/2 and nearly 4. I've got multiple friends who are also mothers who deal with chronic pain as well, though I've never been one to seek out others like me. Well, at least not in the past 15 or so years. A former coworker told me about your blog and since it's local and relevant to me as someone with chronic illness, I checked it out. I was only there a moment when I read this: "Chronic pain sucks! And parenting through the chronic pain double sucks!"


Really?  

I have to say that I find this not only marginally offensive, but also grossly inaccurate. I've run it by a few of my chronically ill friends and they felt the same prod from that statement. Are you honestly saying that having children has made your life WORSE?

If ANYTHING, having the love and energy of my children is motivational and healing. They bring comfort and unconditional love that fast becomes foreign to a PWC. They don't judge. They don't call you a hypochondriac.  Yes, they are demanding and they require a metric shit ton of work and drain already empty energy reserves, but ya know what? What they give in return is ANYTHING but suck.  

I understand that you've not been sick for very long (though I know it feels long to you), and maybe that's a big part of it. I still remember the newness of it. The complete destruction of everything I was and everything I could do, and how that was replaced with nothing but failure and pain and rage and madness and self-loathing. I remember losing every last one of my friends. I remember mourning all the things I used to be and the buzzing ball of energy I had always been. I even remember believing 'them' when they said it was all in my head, at least for a while. I remember wishing it away - willing myself well and fighting so hard, only to be knocked on my ass so hard that I ended up literally bedridden for months, even having to be carried to the bathroom. The bullshit we all have faced (and even after all these years, some of it still comes up) is serious, but the reality is that there ARE things that we have to change our view on not only for ourselves, but for every single person we come in contact with. The biggest one, to me, has been to appreciate every single thing - to find the positive in absolutely anything and everything. And the biggest of those positives is the very existence of my children. If I didn't have them, my ass WOULD stay in the bed each morning, as long as possible. And ya know, sometimes it does.  But not without them there to remind me that even though I'm hurting and can't be Her, I have immense value and I am completely loved. And to label that as "suck" just pisses me right the fuck off. I have a tendency to ramble, so I'm going to stop here. 

I hope you'll take a moment to rethink your view, or at the very least, your wording. You're essentially stabbing mothers and children with that statement.

Thanks for taking the time to read this. 

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