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

Happy News for Our Deanna Project

Our Deanna Project is coming to a nice close. The girls are going home to their mother and the youngest will never know what happened.

All DHS charges against Deanna are being dropped and I never got to make a public appearance as her expert witness, personal shopper and Myalgia Mommie back-up.

So I am smiling. We Myalgia Mommies are highly effective at communication through the written word and well placed phone call. All of this adventure is in greater detail in previous blog posts and a possible alternate blog, Instagram account, and on twitter.

The past week I have been talking more on twitter and blogging less. I have no idea what this means. Honestly, I'm still not sure what twitter is all about.

Enjoy the weekend,

I may "tweet" about it,

Cheers,

ALJ

MM and Thankfulness

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

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

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

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

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

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

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

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

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

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

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

Cheers and Happy Thanksgiving,
ALJ

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

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.

Posted by Anna-Lisa Johanson JD-MPH at 11:20 AM