Tag Archive | SHOWgrins

Bringing Awareness to That Which Is Invisible

What happens when others can’t see your pain? Does it make it any less painful? Ask most people with a chronic illness which causes physical pain that isn’t visible from the outside, and they will tell you they hear this all the time:

“But you look so good. You can’t possibly be sick.”

If only you could see what’s going on inside. Flip my body inside-out, and perhaps you will see a totally different person. That’s what happened when the Sjögren’s Syndrome Foundation (SSF) changed their picture of a lady exhibiting the hallmark signs of Sjögren’s.

Ways Sjögren’s Can Affect the Body

Ways Sjögren’s Can Affect the Body

If you could see all of those physical symptoms listed above from the outside, it would certainly appear that this poor lady is sick. Now take a look at the new picture.

This is Sjögren’s

This is Sjögren’s

That’s why Sjögren’s is considered an invisible illness. Doesn’t she look too good to be sick? She looks very healthy from the outside, right? But just read the small print, and you’ll see a totally different person.

Sjögren’s (pronounced “SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.

April is Sjögren’s Awareness Month, and my goal is to help raise awareness of this debilitating and complex disease. I’ve written about it before. It’s actually the title of my third book, SHOWgrins. SHOWgrins

It was a year ago that I blogged about losing one of the five fabulous women in the book, Judy Kang. “What Do You Do When You Lose One?” Judy was a woman of great faith and fortitude, and she lived her life to the fullest amidst the uncertainty of not knowing from day-to-day what health challenges she would face, as there were countless of them for many years. Some days she never even knew where her next breath would come from. She summarized her battle with Sjögren’s like this: “In 1996 I was diagnosed with a lung illness which they realized was caused from primary Sjögren’s syndrome. I was on oxygen for 9 years and in 2010 managed to get a double lung transplant. I still have symptoms of Sjögren’s but luckily have a renewed life.” In April, 2014, she began her eternal life.

As sad as it makes me to think about my dear friend Judy Kang and her battle with Sjögren’s, I am filled with excitement and gratitude knowing I have an opportunity to help the SSF increase awareness of this very common yet silent and often invisible illness.

If I have sparked your curiosity about the invisibleness of Sjögren’s, please don’t stop with this blog. A good place to look for additional information is right here on the SSF website. You can also find interesting facts that will help you see inside the body of a Sjögren’s patient during Sjögren’s Awareness Month on Facebook. Just consider some of these statements made by Sjögren’s patients. You will find a new post each day on the SSF Facebook page during awareness month.

  • Living with Sjögren’s means I look healthy on the outside, however my disease is attacking my internal organs and destroying me from the inside out.
  • Sjögren’s means living with a disease you don’t understand & hating the feeling of always being sick.
  • Living with Sjögren’s is losing your teeth too young. I rarely smile or talk in public since my inability to produce saliva has caused embarrassing tooth decay.
  • On the days that I can barely get out of bed because of Sjögren’s fatigue, I think, “this is one more day of life that I have lost.”
  • I’m 23 & struggle to open lids/ bottles because of the debilitating pain I experience daily in my hands & wrists. I am so young but feel weak everyday.
  • Sjögren’s means living in daily pain but constantly hearing, “you don’t look sick.”

If you’d like to help bring more awareness of this invisible illness, please consider making a secure tax-deductible online donation here.

All donations go directly to the SSF, and I’ll send you a complimentary PDF copy of my SHOWgrins book for any donation amount. Not only do I write about Sjögren’s, but I also have Sjögren’s. The best part about having it is that I know I have it, so it’s not invisible anymore. I can learn to live well with Sjögren’s despite having it.

 

 

 

 

By HIS Grace on World Sjögren’s Day (July 23)

You may have heard me say that I’m a nurse by profession, author by passion, and storyteller by the grace of God. For just a moment, allow me to explain that “storyteller by the grace of God” part. By nature, I’m a very shy person and could go all day without speaking to anyone. I would much rather sit quietly at a computer screen in my own little world than talk to people. My husband’s family lovingly say I didn’t start talking to them until after I had my first child (and that was at age 29 after we had been married almost 8 years.) When I was growing up, people would jokingly say “I didn’t know you could talk!”

But Galatians 1:15 (NIV) says But when God, who set me apart from my mother’s womb and called me by his grace, was pleased… so I know with absolute certainty that it is HE who called me not only to write, but also to tell stories!  He is undoubtedly the only reason I have ventured so far away from my comfort zone to this newfound passion for writing and storytelling.

With that being said, I’d like to share a video blog with you that astonished even the video producer because she knows me personally and was shocked when I asked her to actually record me… “talking… in front of the camera… willingly…all by myself…”  That is indeed a testimony of how far I have come to willfully appear in front of a camera like this.

Basically, I have two reasons for sharing this video blog today:

  1. Today is World Sjogren’s Day (and the video is about my 2-year journey to winning a gold medal for a book I wrote about Sjogren’s)
  2. Today is also a day that I realize just how far I have come from being that quiet, shy little girl to being a “storyteller” by the grace of God!

My prayer for each of you is that you become what God called you to be, BY HIS GRACE!

The Storyteller

Click picture to watch my video blog on YouTube

After watching my Video Blog, I hope I have inspired you to move beyond your comfort zone and discover your calling.

Also in observance of World Sjogren’s Day, perhaps you would like to make a donation in memory of one of the women in the book, Judy Kang, who lost her battle with Sjogren’s earlier this year. All proceeds go directly to the Sjogren’s Syndrome Foundation to aid in research and better treatment options for those suffering with this disease. Click here to make a secure online donation in Judy’s honor. To learn more about Sjogren’s syndrome, click here.

What Do You Do When You Lose One?

I was filled with great anticipation and nervous excitement exactly one year ago as I would finally get to meet the five fabulous women on the celebrity panel in my book, SHOWgrins. I had grown to love, admire, and respect these remarkable women who I will forever refer to as my “Fab Five.” It was the first time we would all make a national appearance together as we celebrated the book launch which was being held in conjunction with the Sjögren’s Syndrome Foundation (SSF) National Patient Conference. What I didn’t know at the time is that would be the one and ONLY occasion the Fab Five would ever be together.

From left to right, Lynn Petruzzi, Paula Sosin, Estrella Bibbey, Cathy Taylor, Judy Kang, and me (Betty Collier)

From left to right: The Fab Five at the 2013 SSF National Patient Conference for the “SHOWgrins” Book Signing Extravaganza – Lynn Petruzzi, Paula Sosin, Estrella Bibbey, Cathy Taylor, Judy Kang, and me (Betty Collier)

Yesterday, I received an email from Steven Taylor, the SSF CEO. The subject line read “Judy Kang Passed Away.” My heart dropped, I left my office where I was reading the email, and retreated to my bedroom. I began to grieve in heartbroken sorrow. It was like a slide show running through my mind as I remembered that weekend in Bethesda where I met five of the most incredibly courageous women I’ve ever had the pleasure to encounter: Cathy Taylor, Estrella Bibbey, Judy Kang, Lynn Petruzzi, and Paula Sosin.  When I said one name, I said all five. How I loved each one of them. Collectively they were simply the Fab Five, my Fab Five, but now there were only four.

To backtrack just for a moment, Sjögren’s (pronounced SHOW-grins) syndrome is the second most common autoimmune disease affecting approximately 4,000,000 Americans. Because the pronunciation as well as the disease itself is often misunderstood, I entitled my book SHOWgrins to bring about awareness of this sometimes silent and confusing illness. Of the millions of people with this disease, I chose Judy Kang as one of the Fab Five to share her inspirational Sjögren’s journey with the world. My book chronicles the lives of these five extraordinary women who opened their hearts and shared their Sjögren’s stories for everyone to understand more about this disease to help increase awareness and expedite new diagnoses and treatment options. My hope was to inspire millions with their heartwarming stories so that others would be encouraged and motivated to face crossroads in their own lives.

But now my sweet, dear Judy was gone. I had lost one of the Fab Five. I wondered of all the millions of Americans with Sjögren’s syndrome, why had I selected her as one to interview for my book? My heart was breaking, and for a brief moment, I wished I had never known her. Then I would not be in such terrible pain right now trying to pick up the pieces to my broken heart. Then as quickly as that thought entered my mind, I suddenly realized that’s exactly why I had chosen her. She had such a profound impact on my life; she was chosen because her incredible story of triumph and victory over learning to live with Sjögren’s is a story so many struggling people desperately need to hear.

I returned to my office to reply to Steve’s email, but I couldn’t see the computer screen for all the tears swelling in my eyes. My husband walked in and asked what I was doing, and I simply said “replying to an email,” but he knew it was much more than that. With tears rolling down my face, I mumbled the words I should have known I would have to face one day: “One of the women in the book passed away.” I couldn’t even say her name, and now that I’m sitting at this computer screen a day after learning of her passing, the tears are making it nearly impossible to see what I’m typing.

Judy and Betty

Judy and Betty

Judy Kang, a woman of great faith and fortitude, lived her life to the fullest, amidst the uncertainty of not knowing from day-to-day what health challenges she would face, as there were countless of them for many years. Some days she never even knew where her next breath would come from. She summarized her battle with Sjögren’s like this: “In 1996 I was diagnosed with a lung illness which they realized was caused from primary Sjögren’s syndrome. I was on oxygen for 9 years and in 2010 managed to get a double lung transplant. I still have symptoms of Sjögren’s but luckily have a renewed life.”

Her double lung transplant was a journey all by itself. She kept an electronic journal, and the very first entry she wrote while still in the hospital was this: “Whew!  I just finished reading all the journal entries my husband wrote throughout my surgery and “visit” in ICU.  I was crying buckets as I realized what he was going thru and how hard that must have been to be alone. I am amazed at what he did and it just reaffirmed how wonderful he is when I really thought he was in denial of my illness. JY, you really amaze me. You are the best hubby in the world… I have the best family and friends in the world!!  I can’t believe you all followed along and sent prayer after prayer and all that positive energy. You know I was receiving them all because I came out with flying colors. Well, I had NO idea what I went thru because I was so medicated.  But those prayers and karma and positive energy brought me to where I am.”   

She returned home 2 months after the transplant surgery to begin her new normal with the loves of her life, her loving and devoted husband, J.Y., and their two precious children, Ethan and Emily. When her health was better, she even did volunteer work for both the Donor Alliance and the SSF. She has been the guest speaker for many of their events, sharing her remarkable journey which has encouraged and motivated countless others.

So as I reflect back on the courageous fight Judy endured for all those years after being diagnosed in 1996, I can’t believe that for a few seconds I actually thought I would have been better off not knowing her. I simply didn’t want to go through the pain and agony of missing her. But Judy taught me a very valuable lesson. I’m stronger than I was before I met her. The encouragement and inspiration she has given me is absolutely priceless, and I am a far better person for knowing her. When I interviewed Judy for the book, I asked what would her message be to others facing challenges in life. She replied, “Surround yourself with a good support system. Make sure you have a good network of people who understand what you’re going through. Maintain a positive attitude. Keep a good outlook on things. Believe that something will work out. Live your life in a positive way and deal with things as they come. Take what life throws at you, and do your best with it. Never give up, and continue living your life.”

That’s exactly what Judy did, and her message will live on forever. I wanted to go back and read her chapters from the book, but I simply couldn’t bring myself to doing that yet. I will one day, and I’m sure I will learn an even greater lesson as I read what I wrote about this dear warrior and her battle. Others will read my book and be encouraged not only from Judy, but all of the Fab Five. As one reader described it, I felt the women’s pain, their frustrations, their hopes and their determination to push against the pressure Sjögren’s syndrome has put in their lives. All of their stories are well-told by the author, portraying their life before their diagnosis, as well as the challenges they faced when they knew they had the condition. Their bravery and the love and support of their family against the medical, social and mental stress Sjögren’s syndrome can bring are inspiring and heartwarming. Estrella, Judy, Lynn, Paula and Cathy have all managed to make the best of their situation, and have dedicated their lives to promoting awareness of this condition. Their stories, together with the author’s own journey, inspire not only those with Sjögren’s syndrome, but everyone who has had life-changing challenges and problems.”

The saddest part of this story would have been if I was never blessed with the wonderful privilege of meeting Judy.  I am truly honored and filled with unbelievable gratitude that she shared her life with me and trusted me to share it with the world. I realize that I haven’t really lost one of the Fab Five after all.

From left to right: The Fab 5 and Betty: Cathy, Estrella, Paula, Betty, Lynn, and Judy (never lost and never forgotten)

From left to right: Cathy, Estrella, Paula, Betty, Lynn, and Judy (never lost and never forgotten)

In memory of Judy Kang, I set up a fundraising page for the SSF. As Steven Taylor told me, “Judy’s story reminds us why our fight is far from over!  Her memory will keep us all moving forward to ensure every patient is diagnosed and monitored so that serious complications can be stopped early.”

Please click here to make a secure online donation to the SSF in Judy’s memory to help us in this endeavor to win the fight against Sjögren’s.  

For more information about the SSF, visit sjogrens.org.