Thursday, March 19, 2015

Check in!

How goes it?!

My updates to you have been very infrequent lately, but I know you can understand! It's just been crazy!

I've been working hard on the Arthritis Power research program with my friends at CreakyJoints. We're almost ready for our public launch! I'm so excited for you all to see it!

Today has been nuts. Like every other mom out there, the day doesn't stop once I wake up!

No matter how busy Thursdays are though, I always look forward to the end of the day. A few months ago, my husband and I decided that Thursday night would be our in-house date night.  We put the kiddo to bed early, pour ourselves wine, sit in bed, and watch a movie or two.

We did this once and really enjoyed it, so we kept up the tradition.  I really enjoy the time to talk to him without interruptions and to watch something that isn't rated G or made by Disney. And we get a chance to talk like a couple about things that don't have to do with parenting.  It's great.

What traditions do you have with your spouse for reconnecting? I'd love to hear from you!

Happy Thursday Night!
-SM

Friday, March 13, 2015

Twitter Party!

Do you have questions about arthritis medications and family planning? What medications are safe to take? How and when to talk to your doctor about becoming pregnant? What to expect during pregnancy when you have arthritis?

If you do, please join myself, CreakyJoints, and Mother to Baby in a #CreakyChats On Monday, April 6 at 6:00 PM, we're going to be talking about family planning and arthritis.

A full description of the tweet chat can be found here on the CreakyJoints webpage. 

I'm super excited about this! CreakyJoints has always been my safe place on the internet to talk with other patients with arthritis. I hope you can join us!

-SM

Tuesday, February 3, 2015

It's about to get real

Over the past two days, my friend Britt (also known as Hurt Blogger) has tweeted her #ChronicLife, along with some other brave fellow spoonies. (If you haven't checked out the conversation on twitter, please do)

Today, many of my friends, fellow bloggers, fellow spoonies, expressed their concerns and doubts about parenting while living with chronic illness.

I joined in the conversation here and there. Today, I joined in because it broke my heart to hear those doubts about how one can parent while living with a chronic illness.

Long story short, I put myself forward for 48 hours of tweeting my life as a #ChronicMom.

For 48 hours, starting when I wake up tomorrow, I will tweet about everything it takes to get through the day as a mom. I will share my symptoms, not for sympathy, but for clarification on what I experience. I will share how I cope with my health and overcome or adapt in order to balance what's best for myself and my family.

I will be tweeting from my default account (@chellech) and retweeting to my blog handle (@SpoonlessMomma).

I hope that other parents will join in, using either #ChronicMom or #ChronicDad. If you decide to join in, email or tweet me, and I will compile a list once we're all done).

-SM

Wednesday, December 31, 2014

A Year in Review

As east coast USA is winding down 2014, I wanted to write a bit and provide a capstone to my year. It's been almost an entire year of blogging too!

I am incredibly grateful for the changes and developments in the last year.  When I started this blog, I was feeling more out of control in my life than ever.  Things looked good to those on the outside, but I was feeling a bit overwhelmed with my disease...

I feel like in the past year, I have gone from being preoccupied with managing my disease state to being able to manage my life and determine its trajectory. I'm in control more...instead of my health being the determiner.

I'm getting out of the house more, I'm going to medical appointments less, I'm involved in the spoonie community more.

I decided that instead of NOT doing the things that made me happy because they were difficult to do, I was going to do them anyway...and modify as necessary.

I loved gardening as a child (I had my first perennial bed by age 6), but I had given it up in recent years because I was afraid of the physical demands that come with managing an intricate landscape.  Well, I planned and planted a new vegetable garden in my yard, started a new perennial bed, and redid a lot of the landscaping at my house.

My family hadn't been on many vacations since our daughter was born.  This year, we traveled somewhere at least every two months.

I gave up quilting because it was too difficult to do with my arthritic hands...well, I bought a sewing machine and dove into a whole world of sewing that I could never imagine.

I started working more with the folks at CreakyJoints; working with them on their study for patient-led research initiative.

I traveled to Washington DC to advocate for policies that increase access to care for patients living with rheumatic disease.

I went to the American College of Rheumatology conference for the second time in order to bring more information back for mothers, and those who desire to be mothers, with arthritis.

I started blogging.

It's not that my health has improved (in fact, in a lot of ways it's worsened), but I have taken steps to make my life more fulfilling and meaningful for me.

I don't believe in New Year resolutions, but I am promising myself that I will continue to invest in myself and not let my disease dictate what I can and can't do.

Happy New Year Friends,
-SM

Thursday, December 18, 2014

Coming to terms

Very often, I fancy myself Super Woman. I take on WAY more than I should. I volunteer to do things I know will cost me greatly. I do these things because I believe in the cause, or because I love doing them. Sometimes, this means shifting priorities or asking for help and support from my loved ones; and it does mean I say "no" to an awful lot.

Sometimes though, I have to come to terms with the limitations of my body; and it hurts my ego.

In the past few weeks, I haven't been feeling well. I've shared a bit of that with you. I'm flaring. My fatigue and pain levels are super high. All of this coinciding with the holiday season has pretty much meant that commitments outside of my family haven't been attended to. It is what it is.

But the reason that I am writing now is because I just had to admit that I can't do everything, and that I am not Super Woman, and I had to admit to a part of my identity I often ignore.

My daughter's school holiday party is in the morning. I planned to be a classroom volunteer for the party. Being a former teacher, I recognize the importance of quality parent volunteers--plus I have the idea in my head that "this is what stay-at-home moms do."

Well, as I write this I am packed in heat and ice, filled up on medication, hoping that I will eventually become exhausted enough that the pain won't wake me from my sleep. 

Guess who won't be volunteering for the class party?

Admitting that I won't be able to volunteer is admitting that I'm not a "stay-at-home mom," but rather I am disabled. The reason I am home is not to be a stay-at-home mom (although getting to be present for my kid is a big bonus). I am at home because I am disabled. I can't work. I can't be depended upon to show up at specific times because sometimes my body has other plans. 

So, while my little ego is bruised because I can't pretend to be Super Woman right now, I'll have to be content in that I am sending food, craft supplies, and party supplies. My kid will get to school on time with nutritous food in her belly and her holiday shirt on. And for now, that just has to be enough.  

-SM

Saturday, December 13, 2014

Update

I know I have been MIA dears.

I have been ill and run down since my return from Boston.


It's all the normal stuff for us spoonies...but I am using what few spoons I have to parent. I really do hope to be back in the swing of things soon.

I hope you are all well and enjoying the Holidays with your family.

-SM

Wednesday, December 3, 2014

Better late than....

I know. This is super late. I promised to write blog posts about things I learned at ACR (the American College of Rheumatology conference). And, two weeks passed.  I'm sorry.  I would make excuses, but the truth is, my fellow spoonies don't need explanations.  They "get it."

My life is a bit crazy, and I'm flaring. I'm cranky. I'm overly sensitive & emotional. Oh well, sh*t happens.

I'll work on the first post tonight and tomorrow and hope to publish by Friday morning.

-SM