Tag Archive | sjogren’s

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.