September 26th marks Mesothelioma Awareness Day! This day honors those have battled or are still battling mesothelioma. This day is also meant to spread awareness for the disease and the toxic natural fiber that causes it.
What is mesothelioma?
You may ask, what is mesothelioma? It’s a whole lot more than the commercials you see on television. Mesothelioma is a rare and very aggressive cancer caused by exposure to asbestos. It can affect the lungs, abdomen and heart and is typically diagnosed in the later stages due to a long latency period that makes detection difficult.
Once symptoms arise, they are difficult to detect and decipher as mesothelioma symptoms since they are common ailments, like fatigue, hoarseness, nausea, weight loss, chest pain and coughing. It is easy to look past these things, or even at times have them misdiagnosed as other diseases or health conditions.
The prognosis carries a devastating life expectancy of 12-21 months. The saddest part is that it’s totally preventable. We must all come together to spread awareness for this awful disease. Approximately 3,000 new mesothelioma diagnoses are given each year, and about 2,500 people will died from it each year in the United States. Globally, the annual death toll jumps to 43,000.
While the world is making strides to ban asbestos, we’re still not all the way there. Over 60 countries have banned the toxic substance, and another small handful are expected to ban asbestos by 2020. It is sad to say that the United States does not fall under either of those buckets–another reason why we must continue to spread awareness!
How can you make a difference?
To best protect yourself and your loved ones from the dangers of asbestos and the possibility of mesothelioma, be on the lookout for asbestos dangers in your home and environment. Houses that were built before the 1970’s very commonly contain asbestos. For a list of places and products that may contain asbestos, click here.
In addition to educating and protecting yourself and your family, you can help spread the word through your blog or social media platforms. Every new set of eyes on this message means we’re a step closer to 100% awareness of mesothelioma and the dangers of asbestos. When every person knows, they can then protect themselves and avoid the very unfortunate health complications.
If you’d like to help ban asbestos, you can sign a petition listed by the Asbestos Disease Awareness Organization (ADAO) here! As mentioned above, approximately 60 countries have banned asbestos, which means there’s a lot of ground to cover in terms of banning it worldwide. We cannot stop fighting until this toxin is banned globally!
sunset logo 2016
The third-annual Color The World Orange is Nov. 7 and we need your support!
Color The World Orange is an annual event held the first Monday of November to spread awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). Around the world on Nov. 7 supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.
We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.
So let’s all work together to make Color The World Orange 2016 the biggest yet by wearing orange, and encouraging friends and family to wear orange! Don’t forget to post all of that orange to social media with the hashtag: #CRPSORANGEDAY.
Let’s show the world that while we are in pain, we are strong!
Color The World Orange is an annual event held the first Monday of November to bring awareness to Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). It was started in 2014 to bring global attention to CRPS/RSD.
Today we have an interview with an awesome Health Activist – Marla Murasko – who you may recognize from last month’s Advocating For Others webinar. This interview is a look into Marla’s advocacy and hints at our September topic: Working and Health Activism. Marla started her own online community for Mom Entrepreneurs who are also passionate about Special Needs causes. When she’s not focused on Health Activism and caring for her son Jacob, Marla enjoys taking time out to work on her business – another one of her passions. It’s been wonderful getting to know Marla and to hear how became a Health Activist and how she continues to advocate for her son and provide a support network for other working moms.
WEGO Health: Hi Marla, thanks so much for taking the time to share with us. You’re doing so many wonderful things for the Special Needs community and I’m excited to learn more about your work and your passion! Can you tell us a little bit about your background and how you became an advocate for the Special Needs community? What made you get involved in the first place?
Marla: I have always been involved in the special needs community even way back to my high school years. I was a one-on-one buddy for a child with Down Syndrome during my study hall period, volunteered for Special Olympics and was Regional Director for 4 years of the Somerset County Tournament of Champions. So my passion for helping children with special needs started a long time ago.
However, since the birth of my child 5 ½ years ago, who was diagnosed when I was 4 months pregnant with a congenital heart defect and then diagnosed at birth with Down Syndrome it brought this passion closer to my heart. Now it was my son who I was advocating for, so it got more personal for me.
WEGO Health: Your Health Activism really started with self-education, research, and by becoming an empowered patient – can you tell us more about that? How did you empower yourself and what tips do you have for other women (and men) who may be going through a similar experience?
Marla: My health activism truly began the day my son was born. When my husband and I learned of my son’s heart issue during the ultrasound, we were told that the percentage of him having Down Syndrome due to this diagnosis of his heart was extremely high and the only way to confirm that he would be born with Down Syndrome was to do an amniocentesis. We declined that test for personal beliefs. However, to be respectful of my husband’s wishes to not stress myself out for the remainder of the pregnancy by going online and doing research, I truly waited until he was born. Even after his birth it was still hard to digest the fact that he had DS, I went through a short period of time where I went from denial to grief. Then had the opportunity to have a very personal conversation with a hospital chaplain who helped me to realize that I was going to be my son’s biggest advocate. What I would like to say to parents of special needs children is we all have been there, we all have asked the same questions, why him, why us, what are people going to say. That’s normal, that’s part of the grieving process. But that the greatest gift you can give your child is to advocate, educate and take part in their lives. You are going to be their voice. So become as knowledgeable as you can about their rights, your rights, the diagnosis, treatments, insurance, specialists, etc. The more informed you are, you can make better decisions with regards to the care of your child.
WEGO Health: I know that you wrote a book, Jacob’s Journal – My Journey Home – can you tell us a bit about what inspired you to write it and what advice you’d offer other Health Activists who may want to get involved with writing a book?
Marla: Jacob’s Journal – My Journey Home was created through a journal that I had kept at the hospital, of the information that I was being told by the medical profession, the feelings and experiences I was going through and basically to document Jacob’s journey as he grew and progressed. Initially there wasn’t any intentions of writing a book, but through my journey I felt that the information and experiences I was having may be helpful to other parents and decided to share our journey. I did a lot of research as I documented different medical terms, associations, etc. My only advice about writing a book is be patient and passionate about what you are writing about. It may take a while to finish it may not, but you want it to be genuine.
WEGO Health: How did you get involved with your organization “Special Moms Entrepreneur Club”? What was the idea behind starting it?
Marla: SpecialMoms Entrepreneur Club was created out of a need I felt in the special needs community that wasn’t being addressed. As a mom, business owner, entrepreneur I was involved in a mom entrepreneur online community that provided great business information. But what I realized was that only a handful of these members were mothers of special needs children and business owners as well, so it made it hard for them to be able to relate to my particular situation of managing both. However, I felt that when I joined special needs communities it was hard for them to relate to my needs of support from a business perspective. So without having to go to different communities for both personal and professional information when it comes to being the mother of a special needs child and a business owner, I decided to create my own community that would marry the two together and provide a venue to empower mothers of special needs children to follow their dreams of also becoming business owers.
WEGO Health: What made you take your crusade online? What’s the best part about leading your community?
Marla: The best communities are online. You don’t have to be local to other mothers to find a common bond. You can be from two different states and have the same passions and circumstances, so taking it online just seem like the most naturally way to go.
I love leading my community because I love to empower other women, I love to advocate for the special needs community and what best way to do that but through my community.
WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?
Marla: I think my proudest moment was the completion of my book, becoming a first-time author not many can share that title.
My most challenging has been the public school system, and getting my son in the right educational environment with the right support system to make him successful.
WEGO Health: Is there anything you wish the general public knew about the Down Syndrome or the Special Needs Community?
Marla: That we are parents also, we just may have a few more struggles than most. Engage us, engage our children. The world will truly be a better place if everyone just took the time to understand that our children are not different just beautiful and unique.
WEGO Health: How do you raise awareness? What can others do to get involved?
Marla: I raise awareness through my SpecialMoms Entrepreneur community, blogging, organizations I am involved with from being a member to being on the Board. Just get involved with something you are passionate about.
WEGO Health: What next for your community? What are your goals for your organization and what are you most looking forward to?
Marla: I want my community to grow, that it becomes a true source of reference that is being recommended by individuals, organizations and that businesses want to be acquainted with it because they see it as a valuable tool for the special needs community.
I envision providing workshops, seminars, and creating an online quarterly magazine.
WEGO Health: What do you do when you’re not advocating?
Marla: Besides run my businesses, I enjoy my family. Spending time with them is extremely important to me, creating memorable moments is what it’s all about.
Thanks so much for sharing Marla!
Be sure to check out Marla’s work around the web:
Today we’re excited to share with you an interview with a Health Activist caregiver, parent, author, blogger, and hard-working advocate for another. Adrienne Bashista is active online in numerous different places, co-authored the book Easy to Love but Hard to Raise, writes at a blog of the same name, active in the online ADHD, FASD, and developmental disorder communities. Her mission online, which is reflected wonderfully in this interview, is to be real about the challenges and struggles that come with caring for a child with “invisible” disabilities. I think you’ll enjoy what Adrienne had to say as much as I did, and hopefully learned a thing or two. –Amanda
WEGO Health: What inspired you to become a Health Activist Caregiver? What inspired you to take the next step toward advocating for your child? What inspired you to start your site/book?
Adrienne: Like many (if not all) parents of kids who have special needs, I started my journey simply in search of someone to talk to. Someone like me; someone with a kid like mine. The parents who I met while raising my older, neuro-typical son, have become my best friends. They are great supporters and we share much in common, but when it came to the specialized parenting that my younger son required it eventually became clear to me that they couldn’t relate. The early days of parenting my son – before we really found the medical and therapeutic help we needed – were extremely difficult and stressful and I’m sure it often sounded like I was blowing things out of proportion or that I was complaining too much. Certainly decisions we made about doctors and assessments and therapies were greeted with skepticism. Before the experience of raising a child with a developmental disorder, ADHD, and FASD I would have probably been skeptical, too. My whole world view has changed. Because of this world view change I became desperate to find other people like me; thus my journey to create our book and accompanying blog: Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories.
Kay Marner (the other co-editor) and I came up with the idea for the book because we knew that although it seemed like we were the only people struggling with these parenting issues, that indeed, we were not alone. There were plenty of parents just like us – but where to find them? We felt there needed to be a collection of essay about people who were parenting children who had emotional and neurological difficulties that resulted in behavioral problems. Kids who couldn’t be managed using instinctual parenting methods, or sticker charts, or magical countdowns, or whatever methods worked for kids whose behavior issues weren’t as great as our children’s. The response to our original call for contributions was wonderful: we now have 30 parent-contributors and almost 20 “experts” who helped us with the book, but what’s been even more wonderful is the community we’ve formed through our blog and our Facebook page. Finally I have people around me – even though their proximity is virtual – who have been in my shoes. It’s such a comfort.
WEGO Health: What do you wish others knew about being a Caregiver?
Adrienne: How conflicted we feel on a daily basis. I think it’s easy to portray parents of special needs kids as ‘saints’ or ‘wonderful’ or as doing something that other people can’t do, but in reality we are simply doing what we have to do, like all parents. It’s really easy to feel resentful about all of it, but at the same time it’s completely taboo to be angry about parenting a child with special needs. I love my son with all my heart but he is very, very difficult to parent. That’s the truth of the matter. Being told “I could never do what you do,” makes me angry – both because I think most people rise to the occasion when it comes to their children, but also because it puts me on a pedestal, and that’s an uncomfortable place to be. It’s a lot further to fall.
On the Easy to Love blog as well as the Mom’s View of ADHD blog, where I’m a contributor, I try to be as honest as possible about my experiences. If that makes me sound like an angry, resentful person, then so be it, but hopefully I’m coming across as a human being who’s been put into a difficult situation. And hopefully people can relate.
WEGO Health: How do you maintain balance between being a Caregiver and managing your own health, work, etc.?
Adrienne: Ha ha ha! Balance? What’s that?
Just kidding. Actually, these days my life feels very balanced, although from an outsider’s perspective it may look somewhat skewed because of the choices I’ve made to keep my family life sane. First choice: I quit my job. This was a career in which I’d had 15 years invested and a Master’s Degree…but I couldn’t do it and take care of my family’s needs at the same time. Next choice: we pulled our youngest son (our ‘easy to love’ child) out of school so we could homeschool him. In school he was crashing and burning. It was a real square-peg-round-hole situation and it created all kinds of stress in his life and in ours. The school was not very responsive to his needs so we made the choice not to stay and fight for services – which probably would have been at least 2 more years of his failure and my mental health sacrificed – but to quit.
Both of these decisions made me MORE of a caregiver for our family, but both were the right decisions for us and have resulted in a more harmonious life. As for the rest of it – it gets fit in whenever and wherever it can. Although I quit that full-time out-of-the-house job I still do other paid work, but it’s work that can be done while kids are at playdates or at night or on the fly. And it turns out that doing this work – writing and editing books and blogs and doing PR and marketing for our family business – is rewarding and important in a way that my previous career wasn’t. With increased quality of life comes less stress, with less stress comes better health. So it all works out.
WEGO Health: How has the internet and social media changed the role of a Caregiver?
Adrienne: I’ve only ever cared for my child during the age of social media, so I can only imagine how difficult and isolated parents caring for kids like my son felt without online support. I live in a pretty small town and although I know of support groups for parents like me, they meet an hour away from where we live and only once a month. With our blog and our Facebook page, as well as a couple of other great on-line support groups I belong to, I can post a question and have a range of answers within minutes. I also don’t think I’d know as much as I do about my son’s various diagnoses had it not been for the Internet. FASD, in particular, is something that there’s not much written about, nor is there much support for – online or offline. It’s getting better, but without the internet I’d probably know next to nothing. I predict that social networking will be where advocacy for kids and families impacted by FASD will really take off. I’m excited to be a part of it.
WEGO Health: Anything else you’d like to share?
Adrienne: Just that I’d like to invite anyone reading this who is taking care of a child whose behavior pushes your parenting to the limits on a daily basis to join the conversation at the Easy to Love but Hard to Raise blog and Facebook page. We are looking for guest contributors. The more the merrier!
Thanks so much for sharing with us, Adrienne. Your candid approach to these tough topics is inspiring and no doubt really influences your community in a positive way.
Check out more of Adrienne’s work!
Grandparents and Caregiving – The “Skip” Generation
by Tayla Holman
A growing area of caregiving is that of grandparents taking care of their grandchildren, or even their great-grandchildren. Grandparents who are raising their grandchildren are often referred to as the “skip generation.” A “skip” generation refers to a generation two or more below a person. The resulting household is sometimes called a “grandfamily.”
There are almost 6.7 million children in the United States living in grandfamilies, according to Census data from 2009. That’s a 64 percent increase from 10 years ago. 2.5 million children are living primarily with their grandparents, with neither biological parent present in the home. The economy has played a big role in grandchildren living with their grandparents, due to many parents – especially those who are young or single – being financially unable to take care of their children. There are other reasons, such as abuse and neglect, that also lead to more grandparents taking in their children’s children.
So what does it mean to be a grandparent providing care to one or more grandchildren?
It may mean having to postpone retirement plans for a couple of years, or losing post-retirement freedom. It may also mean having to keep a closer eye on finances now that there are more mouths to feed. It also means becoming a parent all over again, going to PTA meetings and helping with homework. And that’s just for grandparents taking care of grandchildren who are healthy.
For grandparents who are taking care of grandchildren who are mentally or physically ill, the responsibility can be an even bigger strain, both financially and mentally. There are some programs in place, such as the “Grandparent Subsidy” in Washington, DC, that provide financial assistance to grandparent caregivers, although that program recently received cuts to its budget.
As a grandparent caregiver, it is important to know that there are resources out there. We’ve already compiled a brief list, but there is one more that should be added. Grandfamilies.org is the website for the Grandfamilies State Law and Policy Resource Center, which is a collaboration between Casey Family Programs, the American Bar Association’s Center on Children and the Law and Generations United. Grandfamilies.org offers information about adoption, financial assistance, caregiver support programs and more. This site is essentially a one-stop destination for all things related to being a grandparent caregiver.
With more and more grandparents becoming caregivers, the need for resources – financial and otherwise – is steadily increasing. What are some other websites or programs we missed? It is said that it takes a village to raise a child, so where else can grandparent caregivers find support once they’ve reentered parenthood?
If you’re look for an idea for something to write about this month, swing back to this post and customize one of these prompts! Feel free to use anywhere on the web be it your blog, your Facebook, or in video form. And, as always, if you’re inspired by a prompt and try it out in your health community – drop us a note and we’ll help you promote!
- Share a story about a time you were cared for by someone else. How did that feel? What did you appreciate most and what was the most challenging part? What do you wish your carer knew at the time?
- When have you cared for someone else? What did you struggle with and how did you find support for yourself? What can patients offer caregivers to make their caring easier or more effective? Any tips to offer?
- Care Package Post. If you were to receive a care package in the mail tomorrow – what would love to find inside? If you’ve made someone else a care package – what did you include?
- Advocating advice. Advocating for yourself is hard – even when you know so much about living with your health condition firsthand. How can others advocate for conditions they don’t have? Is that ok? Write about what they should and should not do and how would you suggest they join your cause.
- Parenting vs. caregiving – is there a difference? Why does society differentiate between caregivers of the elderly and parents of young children. Are parents given enough credit? Check out this post for more on this topic and share your thoughts in a post, video, or discussion.
Here is a great post to kick off our August theme of Advocating for Others written by Editorial Intern Colin DeMatteis that shares some resources for Health Activist caregivers. Caregiving is a significant undertaking no matter who the person receiving the care is. If you’re looking for more information on caregiving or just want to check out some places for support, Colin’s compiled a great collection that should be helpful for you to share with caregivers you may know in your community. –Amanda
A Brief Rundown of Caregiver Resources
From epilepsy to veteran care, from neighbors and spouses to professionals, caregivers come in all styles and help people with all types of conditions.
To say Health Activists who care for others have a difficult job may be the understatement of the year. Taking care of a spouse, family member or even complete stranger is a full time job usually added on top of an already hectic schedule. Many caregivers are also part of the growing post-baby boom “Sandwich Generation:” caregivers who balance taking care of aging parents while also raising children. And while all caregivers can struggle to balance caring for others with self-care, it is especially easy for this middle generation to forget to take care of themselves.
Whether or not you are part of the Sandwich Generation, the following list of online resources can be a great help to any caregiver who needs support, care giving tips, or just a reminder that caregivers, too, deserve some empathy.
The Well Spouse Association: Focused specifically on spousal caregivers, this site offers a number of resources for caregivers helping with any type of condition. Their full list of resources is available here. (If that link is broken, you can find it at http://www.wellspouse.org/resources/)
For spouses in the United States trying to find a human face they can speak to, the WSA also hosts a large number of support groups throughout the U.S. Check their directory here. (http://www.wellspouse.org/support-groups-contacts/sgl-contacts/)
There is a fee to sign up for the full site, but most of their resources can be accessed for free and spouses caring for wounded veterans can join free of charge.
Your Caregiving Journey & CareGiving.com: Started in 1996, caregiving.com has become a repository of information and inspiration for caregivers. The founder of the site is Denise Brown, a ‘caregiving coach’ – someone who helps caregivers and their families get organized to care for a relative – who focuses on elder care. However, her site also features blogs and resources for caring for children, siblings, and spouses as well as tips on how to balance a career with caregiving.
Your Caregiving Journey is a radio show that Denise hosts every week. Shows usually run around an a half hour and focus on single topics such as tips for balancing a caregiving budget, how to combat depression, or ways to deal with caregiving guilt. Nearly 350 episodes are available on demand at http://www.blogtalkradio.com/caregiving
AgingCare.com: This free, practical site brings together a senior housing database, caregiver support advice, and tips for all aspects of cargiving for elders. It’s a great resource if you find yourself in need of information on well-reviewed assisted living facilities or information in general.
The caregiver support page is particularly useful if need tips on getting family involved or need advice on taking a bit of respite. Find the help you need at http://www.agingcare.com/Caregiver-Support
Lotsa Helping Hands: Sometimes caregivers need more than tips and support. Lotsa helping hands is a way to organize and mobilize friends and family members to help take care of someone in need.
In brief, lotsa helping hands is a free, interactive calendar that allows caregivers to plan out daily activities and needs while delegating some activities to friends and family. The calendar of events is private, but a caregiver can grant access to anyone with an email address and the will to help. These people can then volunteer to help with any activity throughout the month. Their names and times update automatically on the calendar, so the primary caregiver knows who will be helping and when.
It’s free, safe, and a great way to get everyone involved. If this sounds like it would be a good fit for you, check it out here: https://wsa.lotsahelpinghands.com/caregiving/home/
Caring From a Distance: Lastly, this website and directory offers help to anyone who is too far removed to give full time care but still wants to participate or have a governing hand. Long distance caregivers who travel often will find this site especially useful. Try using it in conjunction with Lotsa Helping Hands to create a truly effective long-distance care system. Find out more at http://www.cfad.org/index.cfm
Was this brief list helpful to you? Know a site we missed that really helped you? Do you have some caregiving knowledge that others could benefit from? Share your thoughts or a story in the comments.
Last month we looked at self-empowerment and how to advocate for yourself, as a patient, and help your community members to do the same for themselves. This month we’re going to look at another type of advocating that has a whole different set of challenges, rules, and definitions of success: advocating for others.
Caregivers are a unique set of Health Activists who use their detective work, self-education, question-asking, and awareness-raising skills to advocate for the health of loved ones. These Health Activists dedicate their time to caring for a diverse list of people they love: be it their children, family members, parents, significant others, or close friends. Some Health Activist carers advocate for more than one person, keeping their whole family’s health in check. All caregivers work tirelessly (and, sometimes it truly is work – and not easy) to improve the lives of those they care for who may be living with chronic health conditions. They all have different stories to tell, but like patient Health Activists, they offer honest and powerful approaches, and are an inspiring bunch whose voices need to be heard by the greater healthcare community.
Whether you’re a parent who cares for a child with a chronic health condition or care for your spouse or another relative – you have a special set of skills that should be understood, celebrated, and shared. So let’s do that this month. Are you a blogger who writes about caring for your kids? Are you a tweeter who shares resources with fellow caregivers? How has your journey from individual knowledge-seeker translated into caregiver? What challenges do you face as someone who advocates for others? What have you learned along the way that surprised you? What support do you need when things get tough? How do you find it? Do you advocate for yourself as a caregiver?
We hope you’ll join us in reaching out and supporting all the many types of Health Activist carers this month and connect across conditions to learn from each other. Here on the blog we’ll be collecting resources, sharing stories, and highlighting some of the amazing carers in our online community.