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