Saturday, April 18, 2015

Love and Money

Right now, there is a major conference going on, financed my Big Pharma, of various patient voices known around the Internet. 

In the past, I participated in another event supported by this same Big Pharma company. Mostly because of their ties to a nonprofit for arthritis that is very close to my heart.

However, at the end of that last conference, I gave the organizers some feedback: you need to pay your patient participants as a sign that you appreciate their time and expertise. I also said I would bow out of future events because of the expectations on patient participants and the lack of compensation. 

After all, this company makes BILLIONS (yup, with a "B") off of patients. The patients who participated in this event gave them feedback that would be invaluable. Those patients were also asked to sign media releases and the like. 

So, when a new conference for patient bloggers was announced, I was not surprised when I was not asked to attend. Plus, this new event was not completed with the participation of any non-profit, so there was little chance I would sign away my likeness and rights to help the bottom line of a major corporation that wasn't willing to respect and value patient input enough to actually pay them a consulting fee. 

So when a fellow patient advocate who is attending this event tweeted "we do this because of love, not for money" today, I HAD TO LAUGH OUT LOUD. 

Let me be clear. I frequently travel, email, make calls, complete interviews, and much more without any compensation whatsoever for the betterment of my fellow patients and our community. I advocate on my own time, and on my own dime BECAUSE THESE ISSUES ARE IMPORTANT TO ME.  And, because I believe it is my responsibility as a citizen to do all I can for the betterment of my community. I don't do any of these things for money or for recognition or appreciation. I do them simply because I believe I have a responsibility to use my skills for the betterment of my fellow patients.

However. When a big Pharma company with billions in profits wants me to sign a release of my likeness and opinions...and they don't want to compensate me for my time or expertise... Yeah, my answer is going to be "no." Not because I feel I "deserve" to be paid. Not because I think my opinions are so great. But, because it is critical that for-profit companies recognize the value of patients. Because it is not simply enough for a company to say "we involve patients." But, because patients need to be EQUAL stakeholders in the medical process. Because we, as a community, need to be treated as though our opinions and contributions matter as much as the "professionals." Because tokenism isn't enough for me any more. Because, damnit, I do spend many hours working for free, and that means that someone has to pay for all that time; and it isn't going to be the non-profits. 

Also, I was a history major and I am really distrusting when a billion-dollar company tells me I shouldn't make money when I work for them. 

-SM

Monday, March 30, 2015

To Be Anonymous.

When I started this blog, I chose not to share my who I was with my readers. There are a few select folks who know me in everyday life that know about my blog. But not many. The reasons are 1) because I talk about some personal health things that I'd rather not share with everyone 2) because I talk about my husband and my kiddo, and they didn't sign up to be advocates 3) because a lot of my "friends" and family don't really care to hear me "complain" (or you know, tell the truth about how I feel). 

Recently, an old childhood friend has started sharing on Facebook her struggle with her recent diagnosis with Crohn's disease. She shared feelings and questions about her diagnosis that I could remember myself having when o was first diagnosed with arthritis over ten years ago. Well, being me, I shared with her the knowledge I could. I told her to feel free to ask me questions. I shared with her that she wasn't crazy, and that the World Wide Web is filled with other members of this spoonie tribe who would just "get" her. I directed her to my blog.

Sharing that information with her has me thinking.  If only society was okay with me sharing how I truly felt. Maybe a newly diagnosed friend wouldn't have to go through months of feeling alone and isolated with their health. If only I could say "I feel like crap today" and it was received as positively as "I'm feeling wonderful." Maybe then people could understand  it's okay to be vulnerable. If only I could be honest about the day to day work I do with my "advocate" hat on with my friends...If I could only share how I truly struggled, people would understand me more...

Until next time.
-SM




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