Saturday, August 1, 2015

You say you "would never."

People with chronic illnesses are used to people without chronic illness saying all kinds of insensitive things to us and about us. It comes with the territory, and we each have our own ways of dealing with these encounters. From treatment suggestions that helped their cousin's hairdresser's best friend, to misunderstandings of how much many of these diseases really do impact our day to day life, to (my favorite) the sanctimonious "I would nevers." (You know, I WOULD NEVER take that many pills in a day, I WOULD NEVER be able to inject myself with medication, I WOULD NEVER take such toxic drugs). Each of us in the community has our own way of dealing and coping with the rude and insensitive. For me, my reactions and responses vary depending on the person, the comment, and how I'm feeling.

But what do you say when a person WITH YOUR OWN DISEASE has a case of the sanctimonious-I-would-nevers?

Yes, you read that right. While discussing pregnancy with autoimmune disease and the treatment options, I got caught off guard with a "I WOULD NEVER take any of these drugs (biologics) during pregnancy."

First off lady. You have the privilege of being diagnosed in your older years, after you had children, so you were never really presented with the choice. 

Secondly, since you have not had to be faced with that decision. Let me explain my situation. I was diagnosed with autoimmune arthritis at the age of 19. After years of pain and suffering, and me having to find the information on my own. My teen years were consumed with pain and fatigue and swelling and no one ever had an answer as to why. I was finally diagnosed, and I had to grabble with being a young adult and managing a disease that no one should have to deal with. I finally got married, got my head around the idea of having kids, and I had to consider what it would be like to be pregnant, have babies, and raise children all while having to find the confidence in my own self that I would be able to do that while dealing with chronic illness.  The choice for many young women with autoimmune disease is "do I continue this medication or do I risk not being able to take my pregnancy to term or to even be able to hold my baby once their born." It's not an easy decision. And it's f-ing scary.

Finally, I would like to point out that THERE IS RESEARCH to help women with this decision. We know that the antibodies women have developed with autoimmune disease, DO PASS THROUGH THE PLACENTA and CAN cause harm to the unborn baby. So, an unmedicated pregnancy can be a dangerous pregnancy for many of us. But, there are biologic medications that we can take up until a certain point of the pregnancy to help prevent that from happening, and to help with our own disease activity in the process. There is even one biologic medication on the market that is approved for use during pregnancy. But even more than all of these things, there are doctors who are willing to help women through those decisions and help us to deliver healthy, happy babies.

The only thing I could say to this woman (as we were in polite company, and I have to continue working with her in the future) is: "We don't all have that luxury." I think I did mention the fact that we know that autoimmune antibodies can cause harm to the fetus, so doctors and patients need to work together to find a solution that works best for them. But she kept persisting. So I bit my tongue. 

What would you have said?

Thursday, July 9, 2015

My latest blog on CreakyJoints: Confessions of an Attention Seeker

If you have a couple moments, please take the time to read my latest blog on CreakyJoints. (You can visit it directly here.

I wrote it after being accused of being an "attention seeker" by a "friend."

Thanks so much.
-SM

Monday, May 25, 2015

Systemic

Systemic (adjective): pertaining to or affecting the body as a whole (via dictionary.com)

As any person living with arthritis can tell you, the understanding that autoimmune arthritis is just a disease of the joints is…inaccurate. Rather, it is a disease that involves many different body systems and includes many comorbid conditions.  

Inflammation in one body system (like the joints) is just the first domino in a succession for many of us. It’s not fun, and it’s very serious.

Recently, I have been dealing with fevers and pain in my back around my kidneys.  Because I’m used to living with arthritis, I let it go a few days before I took myself in to my primary care doctor. Flare or infection? I needed to know, and I needed to have some labs run to find out. 

It turned out that I did have some inflammation impacting my kidneys. I needed to hydrate, rest, and take care of myself.

I have spent the better part of the past three weeks drinking gallons of water a day and resting as much as possible. I withdrew from my public social media, took days to answer emails, and didn’t spend much time doing things that required me to leave the house.

I should add that I didn’t want to do any of these things: sometimes arthritis has a way of changing the best of plans. 


If only the world knew how serious this disease really was.

Saturday, April 18, 2015

Love and Money

Right now, there is a major conference going on, financed by 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