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in Health · November 14, 2016

How To Become an Advocate for Patients

As you know if you’ve been following me for a while, I do some advocacy work for arthritis patients. I’ve attended the Arthritis Foundation Advocacy Summit in 2015 and 2016 – which involved meeting with Massachusetts representatives and senators – and I’m a Cure Arthritis Ambassador for the Arthritis National Research Foundation. I also use this blog as a form of advocacy through discussing life with chronic illness, clearing up misconceptions of arthritis and chronic pain, sharing how you can help people with arthritis, and more.

With all the talk after the election about repealing the Affordable Care Act, this seems like a good time to talk about advocacy for patients. I’m not going to talk about the issues I have with the possible repealing of it – or the talk from our new president-elect regarding whether or not he or Congress will try to repeal it – or how it affects chronically ill people. However, I will use all the discussion of the ACA as a reason to talk about how to become an advocate for patients. I hope this will help you regardless of the possible changes to American healthcare policy, and regardless of if you’re American.

Looking to support patients who have a particular condition or illness? Check out these 6 elements of becoming an advocate and go out and change the world!

Education: The most important part of being an advocate is knowing what you’re talking about. Most people are more likely to listen and understand if you have facts and you have the answers to your questions. For example, when I start explaining elements of arthritis to people, they often have questions. Sometimes they’re along the lines of, “I thought arthritis was just a thing that happens when you get older,” and in that case it helps for me to know that two thirds of people with arthritis are under 65. Other times, they want to know how arthritis medications work or they assume that arthritis isn’t a big deal. In all of these cases, the self-education I’ve done allows me to answer their questions in a calm way.

Organizations: If you’re looking to be an advocate for a specific condition or illness, look into the organizations that support them, either in your country or area. These organizations can provide you with information, specific ways to support them or the people they serve, and ways to get involved. For example, as I mentioned, I’m involved with the Arthritis Foundation and the Arthritis National Research Foundation. They both support people with arthritis, but they do it in different ways. ANRF focuses entirely on funding research, although they also offer ways to support arthritis patients and they spread information on arthritis. AF, on the other hand, advocates for arthritis patients in Washington as well as state governments, organizes large events to raise money for arthritis research, has a large amount of information on arthritis to educate people, offers ways to get involved, and more. By getting involved in both organizations, I’m able to help other patients as best I can.

6 parts of being an advocate for patients, no matter what type of patient you're advocating for

Platform: By creating a platform for your voice, your message can reach so many people. My platform is this blog as well as my social media accounts. By growing this blog – and especially, in my case, writing about topics other than health – I’m able to reach so many more people than if I was an average person on social media. That’s not to say that you won’t be able to reach people if you have a small number of followers, if you only blog about health concerns, or if you don’t have public social media accounts. You will simply be able to reach more people by growing your platform.

Identifying Goals: How will you know if you’re doing a “good” job? Like with most aspects of life, you’ll never know if you’re succeeding if you don’t have a goal that you’re looking for. This year, it was important to me that I a) attend the Advocacy Summit and meet with the representatives I did last year, b) raise $2,000 for the Walk To Cure Arthritis, c) educate people about arthritis, especially their understanding of chronic pain patients and opioid medications. I went to the Summit; we raised $4,000 for the Walk; and my post about opioid medications was featured on Huffington Post, where it was liked over 800 times, and I have had many conversations with people about it on social media that led to many reevaluating their opinion. Because of this, my advocacy has felt like a success this year.

How To Become an Advocate for Patients
At the Arthritis Foundation Advocacy Summit in March 2016

Not Losing Hope: The thing about advocacy is that it isn’t easy. There will be a lot of people who don’t agree with you or who have other things that take up your time. Sometimes it will feel like you’re not doing anything or that your work doesn’t matter. So it’s important to keep your chin up when it comes to bad or negative days or weeks – and you’re allowed to have them! The important thing is that you keep going and you keep advocating for your cause. Your work does matter to the people you’re advocating for, even if they don’t know that you exist.

Self-Care: And it’s important to take care of yourself first and foremost. You won’t be any good to patients if you’re doing poorly physically and mentally, and that’s especially true if you’re also a patient. Take care of yourself.

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  1. Sweatpants & Equality | How to Care for Ourselves & Others in Uncertain Political Times, Part 1 says:
    December 7, 2016 at 9:40 pm

    […] Tell your friends that you believe them when they say they’re sick (chronically ill), even if you can’t see it or fully understand it. Ask them how you can help them manage their condition and balance their life better. Learn about how to help them in little and big ways. […]

    Reply
  2. Kate the (Almost) Great | Boston Lifestyle Blog - Chronic Illness Bloggers To Follow - Kate the (Almost) Great | Boston Lifestyle Blog says:
    May 5, 2017 at 11:50 am

    […] Your Body with Chronic Illness, How To Become an Advocate for Patients, Resources for People with […]

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I’m Kate, a millennial living in New England. I’m a writer and an advocate for people with chronic illnesses. Join me on my journey to greatness!

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✨ VISIBLE SIGNS OF MY "INVISIBLE" DISABILITY ✨ ✨ VISIBLE SIGNS OF MY "INVISIBLE" DISABILITY ✨ ⁣
⁣
1️⃣ TENS unit clipped on my jeans to help my foot and ankle pain ⁣
2️⃣ Wearing sneakers because a) they're the only shoes I can really tolerate b) I have an indoors and an outdoors pair c) I have to wear sneakers/can't go barefoot for long because of my foot and ankle pain ⁣
3️⃣ Leaning on my closet door slightly because it's the only way I can really stay still for pictures ⁣
4️⃣ Wearing glasses because I can't wear contacts due to dry eyes, which is a side effect of many of my medications ⁣
5️⃣ Popsocket on my phone because I really can't keep a grasp on it due to my super arthritic hands ⁣
⁣
These are just some visible signs! Just because you don't see these things doesn't mean they aren't there if you look. Invisible disabilities aren't truly invisible. ⁣
⁣
➡ What are visible signs of your invisible disability? ⬅ ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣⁣ ⁣
⁣
◾ ⁣
⁣
[Image: Kate stands in front of a mirror on the inside of her closet door, taking a selfie in the mirror., She's a brunette white woman wearing jeans, a blue-and-white top, and round tortoiseshell glasses. She has a TENS unit clipped to her jeans.]
Harley and Piper's new album, coming this fall 😂 ⁣
⁣
Comment below with what you think their album would be named if this was the album cover ⬇ ⁣
⁣
📸 @happydogsboston ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣⁣
⁣
◾⁣
⁣
[Image: 2 dogs but from the perspective of down on the ground looking up at them. The dogs are on a brick pathway in Boston and behind them are classic Boston brownstones, trees without leaves, and a cloudy sky. One dog is a red-and-white cavalier King Charles spaniel, and her ears are flying back in the wind. The other is a golden retriever.]
Even once you're done with school, you should neve Even once you're done with school, you should never stop learning. That doesn't mean that you have to take classes! Learning can look however you want. ⁣
⁣
You can take up a new hobby. ⁣
⁣
You can learn a new skill. ⁣
⁣
You can learn about the world by getting your news from different sources. ⁣
⁣
There are so many ways to learn, and one of the great things about not being in school anymore is that you can learn about whatever you want and whatever interests you. ⁣
⁣
What is something you've learned or learned about? ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣⁣
⁣
◾⁣
⁣
[Image: Kate sits in a gray chair, facing the camera. She's a brunette white woman wearing black pants, a white sweater, and round tortoiseshell glasses. She's holding an open book. Behind her on the walls are a couple of round mirrors.]
I've been missing rural Maine these days. While I I've been missing rural Maine these days. While I like being able to see people out and about in Boston, spending most of 2020 in rural Maine really reinforced how much my soul prefers country to the city. ⁣
⁣
I don't know what to do about that short-term, but it is helpful to know that my long-term goal of moving back to Maine (or at least not living long-term in the city) is in fact something that I will love. ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣⁣
⁣
◾ ⁣
⁣
[Image: Looking at a lake that has a rock-filled "beach" with rocks going out to a point. The other side of the lake is filled with trees.]
Put on a full face of makeup for a small Easter ce Put on a full face of makeup for a small Easter celebration today. This is your reminder that while it's nice to dress up and look nice, celebrating in small ways is just as good as celebrating in big ones. Also, Jesus doesn't want you to risk your health or the health of others to celebrate. ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣ ⁣
⁣
◾ ⁣
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[Image: Kate takes a selfie. She's a brunette white woman wearing a v-neck ribbed shirt, claddagh necklace, and round tortoiseshell glasses.] ⁣
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#bostonbloggers #bostonian #bostonblogger #proptoit #myunicornlife #makemoments #acolorstory #makeyousmilestyle #liveunscripted #howyouglow #mybeautifulmess #choosejoy #influencehercollective #howiseeit #inspiredwomen #documentyourdays #momentsofmine #myeverydaymagic #darlingdaily #todayslovely #seekmoments #momentslikethese #posttheordinary #thatauthenticfeeling #discoverunder5k #BossGirlBloggers #ChronicIllnessBlogger #bostonma
Like I said on Monday, this has been a busy week. Like I said on Monday, this has been a busy week. But I made it through the week! And you almost have, too. ⁣
⁣
Earlier this week, I published a new blog post with tips for new health bloggers. There are 12 in total! And then today I published a new blog post that is an FAQ for POTS. I'm answering questions that I've gotten a lot in my personal life as well as in my advocate life!⁣
⁣
Check these posts out by clicking the link in my bio or ➡ katethealmostgreat.com. ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣
⁣
◾ ⁣
⁣
[Image: Kate sits in a gray chair working on a silver laptop. She's a brunette white woman wearing a gray t-shirt, a lighter gray cardigan, and round tortoiseshell glasses. The t-shirt is mostly covered, but the text on it is CureArthritis.org.]
Piper and Harley want to make sure that you're tak Piper and Harley want to make sure that you're taking care of yourself. If you're not, they're not mad, they're disappointed. ⁣
⁣
In all seriousness, if you're struggling right now, that's okay. We're a year into the pandemic life, and it is 𝘵𝘰𝘶𝘨𝘩 some days. Piper and Harley want to give you hugs, but they know that they can't jump through Instagram to make that happen. But know that they want to! ⁣
⁣
📸 @happydogsboston⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣
⁣
◾ ⁣
⁣
[Image: 2 dogs sit on a brick pathway. The one in front is a red-and-white cavalier King Charles spaniel. The one in the bag is a golden retriever.]
Happy Monday! I'm heading into a hectic week at wo Happy Monday! I'm heading into a hectic week at work, but then I'm taking a long weekend around Easter. Here are some things I do to power through weeks like this: ⁣
▪ Make sure to get a full night's sleep⁣
▪ Drink lots of water ⁣
▪ Take breaks away from the computer⁣
▪ Take all my meds ⁣
▪ Cut myself some slack when I struggle⁣
⁣
What do you do to ensure that you do what you have to while also not pushing yourself into a flare? ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣
⁣
◾ ⁣
⁣
[Image: Kate sits at a white desk typing on a laptop. She's a brunette white woman wearing a blue-and-white striped dress, large brown glasses, a FitBit, and a silver bracelet.]
What spring walks look like these days! With COVID What spring walks look like these days! With COVID-19 still being a big threat - and my immune system is still suppressed! - it's important to keep wearing masks. I'm not vaccinated yet, but even when I do get it, I'll be wearing masks for a while. ⁣
⁣
As you get your vaccine, remember that it takes a few weeks to be vaccinated. I heard that it takes 2-4 weeks after your last shot for your body to do what it needs to do be vaccinated. So don't get the shot and then immediately take your mask off. I know it has been a hard year, but please keep doing the safe behavior that we need for you!⁣
⁣
✨ What does your spring look like? ✨⁣
⁣
◾⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣
⁣
◾⁣
⁣
[Image: Kate takes a selfie while sitting on steps outside. She's a brunette white woman wearing a teal t-shirt, a blue popover fleece, a Boston Red Sox hat, round tortoiseshell glasses, and a black mask. Her cavalier King Charles spaniel is sitting with her and looking up at her.]
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✨ VISIBLE SIGNS OF MY "INVISIBLE" DISABILITY ✨ ✨ VISIBLE SIGNS OF MY "INVISIBLE" DISABILITY ✨ ⁣
⁣
1️⃣ TENS unit clipped on my jeans to help my foot and ankle pain ⁣
2️⃣ Wearing sneakers because a) they're the only shoes I can really tolerate b) I have an indoors and an outdoors pair c) I have to wear sneakers/can't go barefoot for long because of my foot and ankle pain ⁣
3️⃣ Leaning on my closet door slightly because it's the only way I can really stay still for pictures ⁣
4️⃣ Wearing glasses because I can't wear contacts due to dry eyes, which is a side effect of many of my medications ⁣
5️⃣ Popsocket on my phone because I really can't keep a grasp on it due to my super arthritic hands ⁣
⁣
These are just some visible signs! Just because you don't see these things doesn't mean they aren't there if you look. Invisible disabilities aren't truly invisible. ⁣
⁣
➡ What are visible signs of your invisible disability? ⬅ ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣⁣ ⁣
⁣
◾ ⁣
⁣
[Image: Kate stands in front of a mirror on the inside of her closet door, taking a selfie in the mirror., She's a brunette white woman wearing jeans, a blue-and-white top, and round tortoiseshell glasses. She has a TENS unit clipped to her jeans.]
Harley and Piper's new album, coming this fall 😂 ⁣
⁣
Comment below with what you think their album would be named if this was the album cover ⬇ ⁣
⁣
📸 @happydogsboston ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣⁣
⁣
◾⁣
⁣
[Image: 2 dogs but from the perspective of down on the ground looking up at them. The dogs are on a brick pathway in Boston and behind them are classic Boston brownstones, trees without leaves, and a cloudy sky. One dog is a red-and-white cavalier King Charles spaniel, and her ears are flying back in the wind. The other is a golden retriever.]
Even once you're done with school, you should neve Even once you're done with school, you should never stop learning. That doesn't mean that you have to take classes! Learning can look however you want. ⁣
⁣
You can take up a new hobby. ⁣
⁣
You can learn a new skill. ⁣
⁣
You can learn about the world by getting your news from different sources. ⁣
⁣
There are so many ways to learn, and one of the great things about not being in school anymore is that you can learn about whatever you want and whatever interests you. ⁣
⁣
What is something you've learned or learned about? ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣⁣
⁣
◾⁣
⁣
[Image: Kate sits in a gray chair, facing the camera. She's a brunette white woman wearing black pants, a white sweater, and round tortoiseshell glasses. She's holding an open book. Behind her on the walls are a couple of round mirrors.]
I've been missing rural Maine these days. While I I've been missing rural Maine these days. While I like being able to see people out and about in Boston, spending most of 2020 in rural Maine really reinforced how much my soul prefers country to the city. ⁣
⁣
I don't know what to do about that short-term, but it is helpful to know that my long-term goal of moving back to Maine (or at least not living long-term in the city) is in fact something that I will love. ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣⁣
⁣
◾ ⁣
⁣
[Image: Looking at a lake that has a rock-filled "beach" with rocks going out to a point. The other side of the lake is filled with trees.]
Put on a full face of makeup for a small Easter ce Put on a full face of makeup for a small Easter celebration today. This is your reminder that while it's nice to dress up and look nice, celebrating in small ways is just as good as celebrating in big ones. Also, Jesus doesn't want you to risk your health or the health of others to celebrate. ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣ ⁣
⁣
◾ ⁣
⁣
[Image: Kate takes a selfie. She's a brunette white woman wearing a v-neck ribbed shirt, claddagh necklace, and round tortoiseshell glasses.] ⁣
⁣
#bostonbloggers #bostonian #bostonblogger #proptoit #myunicornlife #makemoments #acolorstory #makeyousmilestyle #liveunscripted #howyouglow #mybeautifulmess #choosejoy #influencehercollective #howiseeit #inspiredwomen #documentyourdays #momentsofmine #myeverydaymagic #darlingdaily #todayslovely #seekmoments #momentslikethese #posttheordinary #thatauthenticfeeling #discoverunder5k #BossGirlBloggers #ChronicIllnessBlogger #bostonma
Like I said on Monday, this has been a busy week. Like I said on Monday, this has been a busy week. But I made it through the week! And you almost have, too. ⁣
⁣
Earlier this week, I published a new blog post with tips for new health bloggers. There are 12 in total! And then today I published a new blog post that is an FAQ for POTS. I'm answering questions that I've gotten a lot in my personal life as well as in my advocate life!⁣
⁣
Check these posts out by clicking the link in my bio or ➡ katethealmostgreat.com. ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Check out my blog at the link in my bio or go to katethealmostgreat.com.⁣⁣⁣⁣⁣⁣⁣
⁣
◾ ⁣
⁣
[Image: Kate sits in a gray chair working on a silver laptop. She's a brunette white woman wearing a gray t-shirt, a lighter gray cardigan, and round tortoiseshell glasses. The t-shirt is mostly covered, but the text on it is CureArthritis.org.]
Piper and Harley want to make sure that you're tak Piper and Harley want to make sure that you're taking care of yourself. If you're not, they're not mad, they're disappointed. ⁣
⁣
In all seriousness, if you're struggling right now, that's okay. We're a year into the pandemic life, and it is 𝘵𝘰𝘶𝘨𝘩 some days. Piper and Harley want to give you hugs, but they know that they can't jump through Instagram to make that happen. But know that they want to! ⁣
⁣
📸 @happydogsboston⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣
⁣
◾ ⁣
⁣
[Image: 2 dogs sit on a brick pathway. The one in front is a red-and-white cavalier King Charles spaniel. The one in the bag is a golden retriever.]
Happy Monday! I'm heading into a hectic week at wo Happy Monday! I'm heading into a hectic week at work, but then I'm taking a long weekend around Easter. Here are some things I do to power through weeks like this: ⁣
▪ Make sure to get a full night's sleep⁣
▪ Drink lots of water ⁣
▪ Take breaks away from the computer⁣
▪ Take all my meds ⁣
▪ Cut myself some slack when I struggle⁣
⁣
What do you do to ensure that you do what you have to while also not pushing yourself into a flare? ⁣
⁣
◾ ⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣ ⁣
⁣
◾ ⁣
⁣
[Image: Kate sits at a white desk typing on a laptop. She's a brunette white woman wearing a blue-and-white striped dress, large brown glasses, a FitBit, and a silver bracelet.]
What spring walks look like these days! With COVID What spring walks look like these days! With COVID-19 still being a big threat - and my immune system is still suppressed! - it's important to keep wearing masks. I'm not vaccinated yet, but even when I do get it, I'll be wearing masks for a while. ⁣
⁣
As you get your vaccine, remember that it takes a few weeks to be vaccinated. I heard that it takes 2-4 weeks after your last shot for your body to do what it needs to do be vaccinated. So don't get the shot and then immediately take your mask off. I know it has been a hard year, but please keep doing the safe behavior that we need for you!⁣
⁣
✨ What does your spring look like? ✨⁣
⁣
◾⁣
⁣
I'm Kate, a chronic health blogger who blogs to help chronic illness patients and their loved ones. Follow me for more tips on living an awesome life with chronic illness! ⁣⁣⁣
⁣
◾⁣
⁣
[Image: Kate takes a selfie while sitting on steps outside. She's a brunette white woman wearing a teal t-shirt, a blue popover fleece, a Boston Red Sox hat, round tortoiseshell glasses, and a black mask. Her cavalier King Charles spaniel is sitting with her and looking up at her.]
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