Monday, September 15, 2014

Advocating with a Migraine

We all have those days when we try to tell a story and we realize after ending a conversation that we totally missed a detail that was important...


Try giving an interview and speaking to important issues when you are in the recovery phase of migraine.

And the topic is really important.

Like speciality drug tiers and health insurance.


Wednesday, September 10, 2014

Some Awesome Advocacy Work

Earlier this week, I spent two days in our Nation’s capital working with some really amazing people and the American College of Rheumatology.  The “Advocates for Arthritis” conference brings together physicians, nurses, and patients for two days annually.  The goal of the conference is to address legislative issues that impact patient care.  The second day, teams that hopefully include both healthcare professionals and patients meet with various legislators and/or their staff to help bring those issues to light.  Obviously, having patients discussing how these legislative issues impact their real lives is important.  I am immensely proud to be among the citizens exercising their Constitutional right to inform the government on how they can help the lives of patients.

I hope that every citizen voices their concerns to their Representatives in our government.  Remember that your legislators work for YOU.

That being said, in the coming weeks, I will write posts about varying issues we discussed on the Hill, and calling you to action.  If any of these issues are important you, or impact your life, I want you to get involved.  Your government needs to hear from you, and with the help of great people like you, we can BE THE CHANGE.


Tuesday, August 26, 2014

More Dialogue

"I wanted to make it to the store today, but the pain caught up with me. Ugh, I hate my body."

"I miss running, but I can't do it anymore.  I hate my body."

"The fatigue is kicking my butt today. I hate my body."

"I miss doing the things I used to do. I hate my body."

These are all things I've said, and I've heard plenty of other people say about themselves.  When I talk to other moms without health impairments I hear things like....

"My rear end is so full of cellulite. I hate my body."

"I hate my stomach after having kids, it's so soft and saggy."

"I hate my breasts after breastfeeding."

And so on, and so on and so on.

I decided that I wasn't going to allow my daughter to grow up with a mom who talked this way about herself.  I wasn't going to talk that way about myself because it's beyond negative, and not productive.

Rather, I will appreciate my body for what it is, for what it has done, and for the strength that it does have.

It's an important change to make for lots of reasons, but first and foremost, I need to appreciate what I can do. And that I am more than my disease, and any person is more than a body.  

I do yoga almost daily and I notice that I have strength, flexibility, and balance as much as any other person in class, and sometimes more. I love my body.

I have adapted and found different physical and non-physical tasks that make me happy despite my disease.  I love my body.

In the face of fatigue, I persevere on.  I love my body.

I carried a baby to 38 weeks term and delivered a healthy, beautiful baby girl. I love my body.

I provided my baby's entire nutritional needs for six months and continued to feed and nourish her from my own body for nearly two years.  I love my body.

Even as much as I love my body, I CAN say that I hate arthritis, Hashimoto's, fibromyalgia, migraines, and every other awful diagnosis I have.  But, I a grateful for the lessons they have taught me.

Monday, August 25, 2014

Changing the Dialogue

The language that women and patients use to describe themselves and talk about their bodies is often wholly negative.  It's a dialogue, chronic illness or not, that I wish people would change.

Instead of appreciating our bodies for what they have done, and what they do for us that's good, we use negative descriptors.  We blame ourselves and our bodies for being diseased instead of understanding that despite disease; we are beautiful. We focus on what we can't do instead of what we have accomplished.

I am promising myself to change the dialogue about my body. Instead of focusing on what I can't do, I am going to love my body for what it has done.   

Monday, August 4, 2014

Messages to Women: World Breastfeeding Week

It's world breastfeeding week.  The world is celebrating breastfeeding.  

I thought I'd take a moment to explain the basis of why I advice for breastfeeding and breastfeeding moms. 

Beyond the benefits for mom and baby, I think it all comes down to messages society sends to mothers. 

Breastfeeding is hard. It might be natural, but it takes some hard work at the beginning. And society is set up to make breastfeeding hardER for moms. From the culture of harassing and shaming mothers who breastfeed in public, to standard birthing processes that sabotage the process, to lack of maternity and family leave. But, what does society do to women when we a) set them up for failure and b) tell them they are incapable of nourishing their babies? 

When it comes to moms with chronic illness, the lack of researching on medications and lactation (when such research would be relatively easy to do) means that doctors often wrongly tell mothers that because of their disease, they can't breastfeed. What message is the medical community sending women when they say that because of our disability, our bodies are incapable of nourishing and feeding our babies? What happens when we are denied a basic biological process? 

This is why I will keep working for moms with chronic illnesses. This is why I will keep asking the question "what about breastfeeding?" This is why I will keep sharing the latest research. 

Until the medical community recognizes patients as whole beings with the desire to become parents, get pregnant, breastfeed, I will keep pressing, I will keep blogging. 


Monday, July 14, 2014


Why did I choose a black background with white text for my blog theme?

Because it's easier for me to read when I have a migraine.  Dark screen = good

That's it for random tidbits.
- SM

Wednesday, July 9, 2014

Kiddo's Chores

I met someone today who was surprised that my little one (now, officially 3 years old) has regular chores. 

There are so many things I can say to that, but the bottom line is, my background as a teacher and special educator mean that I am all for teaching independence in areas that I can. 

Yes, I baby my little one and many people would say she's spoiled because she still sleeps with hubby & me most of the time, I still kiss booboos, I cuddle her when she asks...

But nevertheless, she still has responsibilities around the house. 

Here's what she is expected to do:
-feed the dog (we have a pre-measured scoop so no over- or under- feeding)
- put dirty clothes in her own hamper
- she is the designated salad-spinner
- clearing her own place from the table after meals/snacks

Now that she's three, we're going to add wiping the entire table after dinner, and "making" her bed. 

The bottom line parents (especially spoonie parents) is that we need to EXPECT our kids to contribute to household chores early on.  So many parents are over-worked and over-stressed because they do things for their children that the children can do for themselves-doing both ourselves and our children a disservice.

What chores do you make your little ones do? What is one task you can delegate to them to make your house run a little more smoothly?