Greetings from the Garden

I cheated.

This year I got a head start on the garden.

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

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

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

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

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

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

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

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

ALJ
Niamey, Niger

Superheroes, supershopping and Superfoods

My daughters were superheroes for Halloween. 

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

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

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

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

When I called to have the order deleted the woman was not at all surprised when I said my toddler had placed the order. She was impressed by the number and specificity of items. The baby has excellent taste.

 

My older daughter plays on the Internet too and brought me the magic tablet with a screen opened to what looked like a Fibromyalgia support or advocacy page but upon closer scrutiny was selling some secret formula supplements that promised to help provide more energy and improve quality of life. 

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

My initial reaction was to say "Thank you, but I don't think these will work." 

I think it was the wrong answer. My next answer was to tell her that I already took the best vitamins medically recommended and would stick with those but I'm lucky that I had a doctor who did all the reading to tell me which handful of vitamins to take. By this point she had walked away. 

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

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

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

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

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

Kale

Brown Rice

Eggs

Cocoa

Sweet Potatoes

Turmeric 

Red Wine

Apples

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

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

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

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

Maybe next year. 

Boo!

ALJ

Booted!

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

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

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

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

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

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

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

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

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

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

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

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

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

Sky Diving.

Rock climbing. 

Saving the world. 

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

We are making Halloween Decorations. 

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

Cheers,

ALJ

The Ides of March Madness

This morning when I came out of the shower I was delighted to find three things of deodorant on my vanity. The delight came from the fact that I've been looking everywhere for one for the past twenty-four hours. It was as if they materialized overnight.

My house isn't filled with fairies. The cold rain has kept me inside with a sick toddler who is recovered enough to wipe her nose on everything. Sadly, she's not quite well enough to risk exposure to other children. So we are playing at home.

I've cancelled our activities saying the baby is sick. The statement isn't accurate. The toddler is sick. When her fever breaks and she has an hour where she feels better this girl is fast! (Missing deodorant, one lives in our swim class bag, unpacked, one in overnight luggage, in closet, unpacked, the toddler is an evil elf. She also hides keys and throws away phones.)

My Father was visiting. He lives in Colorado, a very cold place that I can't visit comfortably during most of the year. He doesn't read blogs. He also doesn't have a smartphone which made me change my social media ways during his visit.

I put the phone down. My virtual world went silent. Life continued with a few less breaking news stories.

I did glance at twitter where I have my own special world. A friend of decades, who is a RN, forwarded an article about women with chronic health issues. I am going to find a way to link twitter to this blog later today.

The article is about how doctors don't treat women in pain or with any other chronic condition the same as men. It mentioned that many women never get a "real" diagnosis and instead are diagnosed with Fibromyalgia.

The story also described the disparity in women in research for new medications which is as old as research studies. I was saddened to see it printed again that Fibromyalgia is a diagnosis of last resort. To me it is a specific condition that I have lived with for a decade.

Once again I'm blogging from my phone and don't know how to link the article to the blog.

It made me realize that after a decade, nothing has changed in the world of women living with chronic pain. At the same time the existence of this blog means everything has changed because at least now the women with smartphones are complaining about it.

I will update and edit this post throughout the day. So if you come back and re-read this blog in a week it will have an article attached and be completely different.

After I have more tea.

Cheers,
ALJ

Obnoxious Opiates and Toddler Issues

The story of any struggle with Myalgia must include some "laugh about it now" story about opiates. My own decade long saga includes several "Annadotes" that I try to tell in a funny way but if I'm not careful they come across as bitter or pathetic.

This week pain medications are on my mind because even though I am on "Mommy Leave" or disabled status I still read all the Centers for Disease Control press releases and the latest one is that deaths from overdose of opiate medication has risen for the 11th year in a row. When I read this and posted it to the Myalgia Mommies Facebook page, I felt a lump in my gut.

Anyone with a real chronic pain condition knows the frustration of meeting with a new doctor or seeking emergency treatment and wanting to scream "this is not drug seeking behavior!" For me, the last thing I want is pain medicine, it only makes you not care that you are in pain, it doesn't really ever make the pain entirely go away. At least it never has for me.

When I am seeking treatment it is always with the hope that there is a new drug or therapy that will address my specific condition and treat it, not just a pain medicine that will make me numb to the world.

As a Mother, I would never drink and drive. When I get a phone call while driving, I have my older daughter play personal assistant and answer for me. So I don't want to take any level of drugs that would endanger my most precious darlings. (I have driven with one eye closed due to a blinding migraine but I can still focus on the road.)

For years I have struggled to learn to take my opiates correctly. My neurologist has explained pain as a rising curve and told me to take the medicine when I feel the beginning of a bad flare. If you take the medicine when you are already in great pain it won't be effective. I invariably wait until it is too late. I only remember that I have narcotic pain medicine to take when I am in excruciating pain and by then it is "too late" and the medicine only takes the edge off.

Many years ago, the first time I took a daily slow release of OxyContin, a young family member had a friend who became an addict taking the same drug recreationally and ended up in rehab. I made the mistake back then of telling family members what medications I was taking. In those days my illness was new and I was looking to in laws for support. I only made that mistake once.

Under pressure from guilt I weaned off the opiate and the overwhelming pain and resulting time confined to my bed led to a horrible depression. Fortunately, I was under the care of excellent doctors who convinced me of the need to resume a course of treatment that included pain medication.

This week has been a lovely adventure. My 16 month old is a dare devil extraordinaire. She delights in climbing on the kitchen table and flinging herself into my arms. She choke holds and rides my poor cat. When my back and nerves are completely shot and I think I can't go on she tenderly hugs me and gives the sweetest kisses. She also sits on my back. This baby brings me her book, says "read it" and if I don't move fast enough hits me with the book. The pain of being hit with a book distracts me from my fibro flare.

In order to make it thru a bad I use two different muscle relaxants that I alternate in order to keep from forming a tolerance.  In my medicine cabinet I have an opiate pain medicine (Vicodin) that I intentionally ignore because I know that if I take if two days in a row, on the third day I will have a rebound headache from the drug. So I push it to the back of the cupboard and try everything else first.

I can only take oxycontin and dilauded because I have an allergic reaction to Morphine.  I learned this in a fun way that led to me ordering our living room furniture in white when my older daughter was a little over a year old. Fortunately the couch and matching chair had removable covers and my exploration of the different properties of cleaning products began.

I hope this news of abuse doesn't make it harder for us Myalgia Mommies to get the medication that we need. On a deeper level I hope with all my heart that there aren't women out there overwhelmed and in pain who ignore the dosing instructions and take too many pills. The pain medicine can help. It also kills.

The temptation to take extra pills thinking that they might work better or add more relief is easy to sympathize with, particularly for someone who is recently diagnosed. After my many years of trying to find a good mix of therapy, I understand the importance of keeping medication in reserve for when it is really needed. Our bodies build tolerances to everything. The rising death count reported by the CDC indicate that at a certain level the pain medicine is deadly. 

The moral of this story is try harder to go without or use less not more. Lying on the couch with my aromatherapy pillow over my eyes I am with my girls. Listening to them play and watch TV. I can breathe thru thru a bad day and be there for tomorrow. Please keep this in mind and always take less than needed not more.

If you read my other blog, The Silver Ribbon Campaign, you will learn that I lost my Mother to a brain disease. I dearly hope this blog can provide a Myalgia Mommy with the knowledge that you are not alone and thousands of other women also live with daily pain, and take pain medicine only as prescribed.

I write while my baby naps. My body also cries out for a nap in this cold weather and I need another cup of coffee and to bury myself under a blanket.

Cheers,
ALJ

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

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

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

Mommie Blogger FAIL and Insight!

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


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

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

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

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

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

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

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

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

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

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

Thanks.
Anna-Lisa

MM Health Alert

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

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

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

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

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

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

Finally, please don't start any fires.

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

Xo
ALJ
JD-MPH