Friday Chat: When identity, jobs and more get lost

September 12, 2013 by  
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chat friday pinterest Friday Chat: When identity, jobs and more get lost

We had our last chat, Friday at 10 AM PST/1 PM EST (USA) at our Facebook page for Invisible Illness Awareness Week, with special guest, Kelly Fricke. Many of you know her from her videos online and encouragement on Facebook.it really was a great conversation, chatting about our loss of identity when we may not be able to do what we dreamed of, perhaps we are working but it’s not a job we can keep much longer.

Here are the links to the specific questions and answers. You can read them anytime and still comment.

work Friday Chat: When identity, jobs and more get lostCan you believe it is already Friday of Invisible Illness Awareness Week? … If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness. —> Read more here

One of the hardest losses we have when we have a chronic illness is our loss of identity. This often includes some kind of work, whether it is one where we get a paycheck or just the idea of making a difference. How has your work/volunteering/accomplishments changed since you have had an illness?  —> Read more here

Many of us wish we could do what we love and the money would follow. It doesn’t always work that way. How have you found ways to make a living desire your limitations? Feel free to share links in your comments for a gig you have, an Etsy shop, etc. —> Read more here

Sometimes our illness is a full time job, other times we have seasons when we can do something more. How have you learned to balance taking care of yourself with other activities?  —> Read more here

Whether you work or not, in whatever capacity, how do you find purpose with your illness? What is it that gets you out of bed on days you don’t feel like it? —> Read more here

If someone with an illness came to you, asking how she could make a living me find her purpose, despite struggling with daily pain, what advice would you tell him or her?  —> Read more here

Kelly stays to answer questions —> Read more here

We had a GREAT video workshop last year with Tiffany Westrich about finding our identity when ill. If this is an area you would like to understand better and walk through the process of who you were “before illness” and now “after illness” this is an awesome resource. Bookmark it to watch later!

And this closes our official chats for Invisible illness Awareness Week. Thank you sooo-o-o much for participating this week. You can return here anytime and write additional comments or read comments. You can also do a search in Facebook for #invisibleillnesschat for all of our chats this week. We will also link to this at our website, invisibleillnessweek.com . Be sure to visit Kelly’s web page too at Facebook.com/FindingStrengthThroughPain —> Read more here

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Thurs Chat: Being an advocate for awareness for any disease

September 11, 2013 by  
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chat thursday pinterest Thurs Chat: Being an advocate for awareness for any disease

We’re talked about advocacy on Thursday at 11 AM PST/2 PM EST (USA) at our Invisible Illness Awareness Week Facebook Page. Whether you have an illness-related blog to just posting about invisible illness stuff on Facebook occasionally, chances are you are an advocate.

We were joined by special guest, Tiffany Westrich. She is the CEO and Co-Founder of the International Foundation for Autoimmune Arthritis (formerly known as the International Autoimmune Arthritis Movement) and Event Coordinator and Host of World Autoimmune Arthritis Day.

Below are links to the questions we chatted about and the responses. You can still click on any link and find the conversation and Facebook and comment.

healthadvocate Thurs Chat: Being an advocate for awareness for any diseaseHello, friends! I am so glad you are here to participate in today’s chat. We’re excited to have Tiffany Westrich with us and she is an advocate! She is the CEO and Co-Founder of the International Foundation for Autoimmune Arthritis (formerly known as the International Autoimmune Arthritis Movement) and Event Coordinator and Host of World Autoimmune Arthritis Day. —> Read more here

We will be chatting about how we are advocates and if we feel we make a difference.  Tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness. —> Read more here

If you are participating in today’s chat, you are taking your first step in being an advocate just for showing up. Being an advocate means to publicly support a cause. So there are varying degrees of advocating. How do you advocate for something illness-related and share what health-related topic it is? (blogs, social media, writing, videos, etc.) —> Read more here

The Internet gives the opportunity for us all to be advocates, even when we don’t feel well. When I began my organization it was 1996 and one of the few ways to advocate was in your own website or a newsgroup. Have YOU become more of an advocate than 5 years ago? How has it made you feel? Tiffany, maybe you can start us off because you have done a lot of advocating! —> Read more here

Some people are advocates in a more inspirational way, supporting those with a health condition, through writings and videos. What kind if advocate do you typically respond to? Those with clear causes and steps to make a difference, or those who inspire you to make changes in your own life–so you can inspire others? —> Read more here

Being an advocate for our own health–making sure we are assertive for our own treatment–can be exhausting. How would you encourage other people who have an illness to continue advocating when they are ready to collapse and let someone else decide things for them? What tricks or tools do you use to advocate for yourself? Tiffany, do you have some tips? —> Read more here

How does it feel to be an advocate for a health cause? Tiffany is an advocate for specific illnesses. When you are able to encourage others who are fighting the same battles, does it help you focus on how to spend your time and energy? Do you see your advocacy as something fun to do, something necessary, or a part of your calling and purpose for having this disease? —> Read more here

Is there a question you would like to ask Tiffany? She will be here a few more minutes if you would like to find out how she went from being a patient to an advocate for patients. —> Read more here

Thank you for participating in today’s chat about advocacy and we appreciate Tiffany joining us today! —> Read more here

 

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Wednesday Chat: Why the confusion about looking good?

September 10, 2013 by  
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Wednesday at 11 AM PST/2 PM EST (USA) we chatted at the Invisible Illness Awareness Week Facebook Page . We talked about how illness has a way of confusing simple matters like appearance and should we try to keep looking good–or not? We generally don’t feel happy about the fact that we are wearing sweats all the time, avoiding anything without elastic in the waist, or our hair looking sloppy. And yet, when we hear, “you look great” we can get annoyed or defensive of our pain.

We were joined by Kimberli Freilinger, who is Mrs. Oregon Plus America and she lives with mitochondrial disease. Kimberli is a trained child and family therapist. She currently teaches Psychology courses part time at Western Oregon University. As Mrs. Oregon Plus America and the Oregon Ambassador for the United Mitochondrial Disease Foundation, she advocates for and supports those living with mitochondrial disease. She is a wife to high school sweetheart, Shawn for 20 years. They have two teenage sons. Being an advocate for a terrible disease while “looking fine” is a huge struggle and one we will get to discuss together!

You can still read and comment on our chat! Below are the links to the conversation.

Untitled 12 Wednesday Chat: Why the confusion about looking good?We will be talking about appearance and invisible illness–do we want to look good or not? If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness. —> Read more here

Illness has a way of confusing simple matters like appearance. We generally don’t feel happy about the fact that we are wearing sweats all the time, avoiding anything without elastic in the waist, or our hair looking sloppy. And yet, when we hear, “you look great” we can get annoyed or defensive of our pain. When you have TRIED to look good –and receive a compliment –does it still feel like your pain is being belittled? —> Read more here

So when we hear “you look so good” or “you don’t LOOK sick” we aren’t thinking about our actual appearance at all, right? What we are feeling is that our pain and suffering isn’t seen. What do you usually HEAR? A compliment or skepticism? —> Read more here

Do you feel a little better physically when you try to put on something nice, wear some mascara, wash your hair? Why do you think some people in the illness community think this is “giving in?” Are we not allowed to try to feel good about our self? A lot of people decide to just allow themselves to be a slob and tell everyone else to “deal with it.” But does it help our health to totally let go of looking decent? —> Read more here

As a beauty queen–with a chronic illness–Kimberli has had experience with both pain and primping. Kimberli, do you ever feel like you are betraying your illness community be “looking good” despite what is going on in the inside? Is to look good–despite illness–making it harder for other people who have your disease to be believed? —> Read more here

Have you ever purposely not tried to look good so someone could more easily believe/accept that you were feeling poorly? (a spouse, a friend, the doctor, a lab technician, a boss, etc) —> Read more here

Living with a painful condition can rule our body. By trying to take care of our self are we taking back some of the control? Or wasting time on a body that is going to fall apart anyway? —> Read more here

I’d like to open this up for you to ask questions of Kimberli. —> Read more here

Thanks so much for sharing today. It can help to talk about the emotions behind our reactions and I hope this has been helpful. Don’t forget that you can return here anytime and write additional comments or read comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week. We will also link to this at our website. Here is to hoping you can feel as well as you look–or vice versa. Whatever works! —> Read more here

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Tuesday Chat: How illness affects our relationships

September 9, 2013 by  
Filed under Seminars, What's New, What's New, How to Help

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chat tuesday pinterest Tuesday Chat: How illness affects our relationships

We chatted about relationships on Tuesday, joined by Jenni Saake who is an author, speaker, mom to three kids, and she lives with multiple chronic illnesses. A couple of years ago she had severe strokes and is now a stroke survivor who continues to share her experience through her blogs (health conditions | stroke) and books.

goodconversation3 Tuesday Chat: How illness affects our relationshipsGreeting and meeting others: Hello! I am so glad you are here. We are excited to have Jenni Saake with us. Jenni is an author, speaker, ministry leader, mom of three, and a stroke survivor and I know she will add a lot to our chat as we talk about RELATIONSHIPS! I (Lisa) will be posting a question and then you can comment or reply to others comments. We will be talking about relationships today and how they relate to our illness. —> Read more here

Yesterday we spoke about how “invisible illness” is referring to a lack of visual symptoms. When others cannot see what they believe is pain –or signs of illness–it is natural for them to doubt the severity of our illness. How has living with an INVISIBLE illness affected your relationships?   —> Read more here

Have you ever had someone doubt that you were really ill at all or that your illness was as debilitating as you made it sound to be? Did you confront this person? Or try to explain? Or did you just go home and cry?   —> Read more here

How do you feel your family–a spouse children, adult children, or your own parents--understand (or don’t understand) your illness and how it affects your daily life?  —> Read more here

If you found a way to explain your illness, or help someone better understand it, please share it below (for example, a deep conversation, a book they read, attending a support group or a doctor’s appointment with you, seeing a scar from a procedure, having their illness experience) —> Read more here

Sometimes our illness is hard to see and then it becomes more visible. How was it different when people could see the illness/disability?  —> Read more here

If you could have a conversation with a loved one or friend about what your life is really like, and you knew they would respond positively, what kinds if things would you say? —> Read more here

Thank you so much for pouring out your heart, friends. I know it can be hard to talk about hurt feelings and those who have doubted your illness. Know that sharing about it in this community will encourage others. Remember, you can return anytime and write additional comments or read others comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week. We will also link to this at our website. Be sure to visit Jenni’s page at http://GivenMeAThorn.blogspot.com or http://StrokeOfGrace.blogspot.com . May you have a blessed day. —> Read more here

To see ALL CHATS of the entire week, you can use hashtag #invisibleillnesschat or just click here.

Thank you for making this chat a great opportunity to learn more about invisible illness, how we identify with it and a chance for us to encourage each other. Take a moment to share this page with someone else. You can pin it, share it on Facebook or your support group. You never know who is suffering silently and feeling invisible. Thanks,

 

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Monday Chat: Why does it matter if the illness is INVISIBLE?

September 8, 2013 by  
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Does it matter if the illness is invisible or not? Why?

We chatted about invisible illness on Monday, September 9 at 11 AM PST/2 PM EST (USA). Christine of ButYouDontLookSick.com joined us!

Below you will find links to the specific questions and answers. You can still add your comment if you like or respond to the comments of others.

friends1 Monday Chat: Why does it matter if the illness is INVISIBLE?Welcome, everyone. Thank you for joining us. This is Lisa behind the scenes along with Christine Miserandino of the Spoon Theory. I will be posting a question and then you will comment and reply to others about it. We will be talking about the idea of “invisible illness” today. —>Read more here

Getting to know you…
If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness, or… your favorite color, your favorite shoes, whatever! We want this to be fun!  —>Read more here

While a chronic illness is more about the length of time an illness exists, “invisible illness” is more about how you relate to other people and they relate to you since you look healthy. How does using the term “invisible illness” validate how you feel about your illness? Christine, you have done this from the beginning with your outreach. Can you comment on this? —> Read more here

Have you ever explained to loved ones how you have an invisible illness or hidden disabilities? Did it help them understand the impact of your struggles at all–or not? I know Christine’s Spoon Theory has helped many people explain.  —> Read more here

When you identify with having an invisible illness, does it help you feel more validated–or does it create more bitterness–an “us” versus “them” mentality? How can we prevent our disappointment in people making us resentful?  —>Read more here

When you share invisible illness memes or images or sayings online among your healthy friends, do you think it makes a little bit of a difference? Do they gradually come to understand there is more to how you are feeling than just how you appear? —>Read more here

As part of the invisible illness community, do you feel having these “friendships” helps how well you cope with your disease? Does having a group of people who “look fine but feel awful” make you feel more understood or is it too generalized and you find more comfort from those with the same illness? —>Read more here

Thank you everyone for joining us today, especially our guest, Christine! You can return here anytime and comment some more or read others comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week.  —>Read more here

Christine has been having some computer problems but she will be here for the next hour. Do you have a question for her, the special woman who came up with The Spoon Theory? Feel free to post here below and she will answer you personally! (thanks, Christine!) —> Read more here

 

To see ALL CHATS of the entire week, you can use hashtag #invisibleillnesschat or just click here.

Thank you for making this chat a great opportunity to learn more about invisible illness, how we identify with it and a chance for us to encourage each other. Take a moment to share this page with someone else. You can pin it, share it on Facebook or your support group. You never know who is suffering silently and feeling invisible. Thanks,

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Chats Begin Monday for Invisible Illness Awareness Week

September 7, 2013 by  
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iichat announcement iiwebsite2 Chats Begin Monday for Invisible Illness Awareness Week
So, Invisible Illness Awareness Week is here! Each day we are going to be having a chat session over on our Facebook page. Just go to http://facebook.com/invisibleillnessweek and we will be posting questions for you to comment on, along with some special guests. Although I am still finalizing some of the days, I can tell you that Christine Miserandino from ButYouDontLookSick.com –the woman behind The Spoon Theory–will be joining us on Monday!

Chats will take place LIVE at 11 AM Pacific/2 PM Eastern time on M, T, W, and Th. On Friday, chat will be held at 10 AM PST/1 PM EST.

If you can’t make it, don’t worry. Since it is all on our Facebook page, you can come back and read it any time. Watch for the large graphics in the posts area that will show you where to find them.

I am looking forward to getting to know you better this week.

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Seminar: Closing Seminar with Lisa Copen

September 14, 2012 by  
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copen lisa Seminar: Closing Seminar with Lisa CopenLisa Copen

Join Lisa as she talk about how it can “feel” to go to a “virtual” conference. How Invisible Illness Awareness Week impacted others, what she hopes you will take away from this week and more. She is interviewed by her husband, Joel.

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Audio File – Lisa Copen

 

Wondering what the “headquarters” for Invisible Illness Awareness Week looks like? Lisa takes you on a 3-minute tour of her home office.

copen lisa Seminar: Closing Seminar with Lisa Copen
About Lisa Copen

Lisa was diagnosed with rheumatoid arthritis at the age of 24, in the midst of a typical life, finishing college and discovering where her passions resided. In less than a few weeks she went from significant pain in her feet to her entire body flaring. After changing doctors, searching for answers, she was diagnosed short thereafter. She has never been in remission and her rheumatologist has said that 80% of her pain is due to deformity.

She began Rest Ministries in 1996 after searching for a place where she could share her faith. Through this she has found her true purpose in having the opportunity to speak and write, encouraging others through whatever she pursues. She has written various books including Bible studies, and How to Start a Chronic Illness Small Group Ministry.

Lisa considers every day precious. She is a survivor of the flesh eating bacteria in 2008 and had four joints replaced in her left hand in 2009. Despite her daily pain and fatigue, her 9-year-old son keeps her going. She lives in San Diego with her husband and son and deals with insomnia by working at 3 AM.

Get to know Lisa: Lisa’s webpage | Rest Ministries webpage | Lisa on Facebook | Lisa on Twitter | Invisible Illness Week on Twitter | Invisible Illness Week on Facebook

Lisa’s books: Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, Why Can’t I Make People Understand, Mosaic Moments: Devotionals For the Chronically Ill, see more

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Seminar: Communicating With Your Spouse When Chronically Ill

September 14, 2012 by  
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Farrel Pam Seminar: Communicating With Your Spouse When Chronically IllPam Farrel

Marriage can be difficult. Add into that the tension of a spouse living with a chronic illness and it’s a perfect storm for stress building. But you can find skills to help communication in marriage. What are some ways you can more effectively communicate with your spouse? How can you make sure each person feels as though they can share? How can you find a balance between what you share with your spouse that is helpful, versus what is overwhelming? How do men and women communicate differently? Pam addresses all of these and more and will leave you nodding in agreement, “Yep! That’s us!”

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leave comments1 Seminar: Communicating With Your Spouse When Chronically IllAudio file – Pam Farrel

Farrel Pam Seminar: Communicating With Your Spouse When Chronically Ill

About Pam Farrel

Pam Farrel is a challenger, cheerleader and coach. With her husband Bill, the Farrels are international speakers, and authors of over 35 books including best-selling Men Are Like Waffles–Women Are Like Spaghetti: Understanding and Delighting in Your Differences

They are relationship specialist and seek to help people become “Love-Wise” Pam has a heart for women, first as a mentor and youth pastor’s wife, then serving for 15+ years as Director of Women’s Ministry alongside her husband, Bill, a senior pastor. Now the Farrels speak full time for women, men, couples, singles, and families and are frequents guests on radio and TV.

Pam is also a sought after women’s speaker encouraging women from her books: Woman of Influence, Woman of Confidence, 10 Best Decisions a Woman Can Make, and Devotions for Women on the Go! Her newest are 52 Ways to Wow Your Husband, Raising a Modern Day Princess, 10 Secrets to Living Smart, Savvy and Strong, LOL with God, and Becoming a Brave New Woman.

Pam has experience as a radio show host, Director of Women, pastor’s wife, and mentor. She is also the founder and President of Seasoned Sisters, a ministry to women 40-65. (www.seasonedsisters.com)

A few of their books include: Single Men are like Waffles, Single Women are like Spaghetti, The Marriage Code, Red Hot Monogamy, Why Men and Women Act the Way They Do, Love, Honor and Forgive, and 10 Best Decisions a Parent Can Make, 10 Best Decisions a Single Can Make, and 10 Best Decisions a Couple Can Make (Harvest House).

Pam is a mentor to numerous authors and speakers, nurturing leaders through her Circle of Influence program. Pam is a busy conference speaker for women’s events including speaking for over 12,000 moms at Hearts at Home, and more intimate groups, like pastor’s wives or leadership events, business seminars, military wives, church women’s retreats and conference center venues.

Both Bill and Pam travel globally to encourage audiences, together as well as solo, most recently to Singapore, Canada, Korea, Mexico, and Germany. They have been happily married for 32 years and are parents to three children, and two sons are married so their family now includes two daughters-in-laws and two small granddaughters and a new grandson. The Farrels live in San Diego, CA.

Get to know Pam! Pam’s web site | Pam on Facebook | Pam on Twitter

Some of Pam’s books: Woman of Influence: Ten Traits of Those Who Want to Make a Difference, Woman of Confidence: Step into God’s Adventure for Your Life, 10 Best Decisions a Woman Can Make, and Devotions for Women on the Go! Her newest are 52 Ways to Wow Your Husband: How to Put a Smile on His Face, Raising a Modern-Day Princess, 10 Secrets to Living Smart, Savvy, and Strong, LOL with God: Devotional Messages of Hope & Humor for Women, Becoming a Brave New Woman: Step into God’s Adventure for You.

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Seminar: Positively Real: Keeping The Topic of Illness Sweet without Sugar-coating

September 14, 2012 by  
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young kelly Seminar: Positively Real: Keeping The Topic of Illness Sweet without Sugar coatingKelly Young

Do you ever grow weary of how the media portrays your illness (if they even do)? Does it ever feel like they are sugar-coating the disease and the reality of it? How about when the doctor describes your illness as being more of an inconvenience than a life-changer? What can you do in these situations? How do you keep a sense of humor? When do you let it go, versus stand up for what you believe? Kelly will describe some of the ways she copes with illness and the misportrayal of her illness, among others.

to increase video size Seminar: Positively Real: Keeping The Topic of Illness Sweet without Sugar coatingWhen you are done listening, we appreciate you clicking “like” for Facebook, or Pinning it to Pinterest. We would love to be able to encourage your friends today.


leave comments1 Seminar: Positively Real: Keeping The Topic of Illness Sweet without Sugar coatingKelly Young – Audio File

young kelly Seminar: Positively Real: Keeping The Topic of Illness Sweet without Sugar coating

About Kelly Young

Kelly Young is a patient advocate providing ways for people to be better informed and have a greater voice in their healthcare. She received the 2011 WebMD Health Hero award for her work with Rheumatoid Arthritis (RA) patients. Through her writing, speaking, and use of social media, Kelly stays busy helping others to become more aware of Rheumatoid Disease; advocating to the medical community for patients’ needs; creating opportunities for patients to connect and empower themselves.

In 2009, Kelly created RA Warrior.com, a comprehensive website about RA of about 700 pages and the hub a large, vibrant patient community. She also writes periodically for professional newsletters and websites including Healthcare Professionals Live and The Rheumatologist. Kelly serves on the Mayo Clinic Center for Social Media Advisory Board. Kelly has consulted for industry professionals and CME projects.

Thousands have enjoyed her YouTube channel’s realistic Public Service Announcements which that RA is not just “arthritis.” There are about 16,500 friends on her informative and friendly Facebook Fan Page. She moderates a weekly Twitter-chat on rheumatology topics, which can be followed with the hashtag she created: #rheum.

Kelly is the founding president of the Rheumatoid Patient Foundation (RPF) the first non-profit which exists solely to improve the lives of Rheumatoid patients. Through the RPF, she has initiated projects and built relationships which will expand understanding of RA and improve care for patients. It is her passion to see that there will not be another generation of Rheumatoid patients who suffer the same way past ones have.

Kelly is a mother of five who has homeschooled for 18 years. She has lived with unrelenting Rheumatoid Disease for six and a half years. She shares love and hope with others, grateful for God’s help to use her illness for good.

Get to know Kelly! Kelly’s web site, RA Warrior| Kelly on Facebook | Kelly on Twitter

At RAWarrior you will find 700 free articles w/ the best information on RA online, served up in a hopeful and encouraging voice and a free monthly newsletter.

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Seminar: Transitioning to College and Career with a Chronic Illness

September 14, 2012 by  
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Kingery Naomi Seminar: Transitioning to College and Career with a Chronic IllnessNaomi Kingery

If you or someone you love is a teenager with illness, you will find Naomi is a wonderful encourager to you. But even if you are not a teenager, you will find this young woman wise beyond her years and a real inspiration when it comes to living with an invisible illness. She discusses the journey of being a tween with an illness to teenager, and then through college and career. Hear her tips for those with illness for going to college and career aspirations.

to increase video size Seminar: Transitioning to College and Career with a Chronic IllnessWhen you are done listening, we appreciate you clicking “like” for Facebook, or Pinning it to Pinterest. We would love to be able to encourage your friends today.

leave comments1 Seminar: Transitioning to College and Career with a Chronic IllnessAudio file – Naomi Kingery

Kingery Naomi Seminar: Transitioning to College and Career with a Chronic IllnessAbout Naomi Kingery

Naomi Kingery, also known as The Diabetic Diva®, was diagnosed with type 1 diabetes a decade ago. Kingery made a decision to begin to help others embrace their chronic illness as she learned to do the same while growing up with diabetes.

Through the years her work in the diabetes community has included being the author of The Sugar Free Series, a blogger, and a Diabetes Advocate. She also currently working as an employee for Medtronic and is attending college for a degree in Kinesiology.

Get to know Naomi! | Naomi’s website | Naomi on Facebook Facebook |Naomi on Twitter

Naomi’s books are all from “The Sugar Free Series” (1 paper back called SUGAR FREE ME and 2 eBooks called Sugar Free Teens: The Diabetic Diva’s 5 Tips on Reaching Your Potential and Sugar Free Support: The Balance of Supporting Your Diabetic Through Every High and Low. She is working on the last book in the series.

Books are available online through Amazon and Barnes and Noble but direct purchase links are available on her website.

On her web site, Live to Love Diabetes you will find a weekly blog where she documents what it is like to live with diabetes; her yoga Cd-Rom and DVD; A list of media resources that have shared Naomi’s story, including previous radio interviews for Invisible Illness Week.

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