In honor of Invisible Illness Week, I’ve been sharing some things I’ve learned along my journey with Wegener’s Granulomatosis (WG). You can read them here: Recognize the body/spirit connection; See opportunities, not limitations; Realize that good health is not everything; Cherish the time you have. Today I thought I would share some facts about my story, and my day-to-day life with chronic invisible illness. → The disease I have is Wegener's Granulomatosis. You can read more about it here and here. It is treatable, but not curable - and can recur at any time. → I first showed symptoms in August 2006, starting gradually with sinus and hearing trouble. My symptoms [...Read More]
Things I’ve Learned from Chronic Illness (4)
September 13, 2012 By 3 Comments
In honor of Invisible Illness Week, I’m sharing some things I’ve learned along my journey with Wegener’s Granulomatosis. So far, here's what I've shared: 1- Recognize the body/spirit connection 2- See opportunities, not limitations 3- Realize that good health is not everything Lesson #4: cherish the time you have Life is uncertain. We all know that. Scripture describes our life as a vapor that vanishes, and as a flower that withers, and as grass that fades away. We cannot count on next month, next week, or even our next breath. By the time I was diagnosed with Wegener's, over half my blood had disintegrated. It was gone. And I'm not exaggerating when I say that I [...Read More]
Things I’ve Learned from Chronic Illness (3)
September 12, 2012 By 7 Comments
In honor of Invisible Illness Week, I'm sharing some things I've learned along my journey with Wegener's Granulomatosis. Read the last two posts here and here. Lesson #3: realize that good health is not everything Our bodies start decaying the moment we're born. Things grow and regenerate for the first few decades - but even then, we're still starting to degenerate. And yet, we spend so much time and energy trying to relieve symptoms and increase energy and just plain feel better! But is it really worth all that effort? I have a hard time with this. Wegener's is fatal if left untreated. And a flareup, or even a regular cold, could land me in the hospital (or worse). So [...Read More]
Things I’ve Learned from Chronic Illness (2)
September 11, 2012 By 11 Comments
In honor of Invisible Illness Week, I'm sharing some things I've learned along my journey with Wegener's Granulomatosis. Yesterday I shared about recognizing the body/spirit connection. Lesson #2: see opportunities, not limitations It would be so easy to compare my current life with how I lived before Wegener's. It would be easy to feel sorry for how much I can't do anymore. And I admit, I do sometimes struggle with what I'm missing. I wish I could still run and hike regularly. I wish I could be at church more often. I wish I could see my friends more frequently. I wish I could volunteer for more activities, help out more often, "be there" more consistently. Anyone who's ever been [...Read More]
Things I’ve Learned from Chronic Illness (1)
September 10, 2012 By 14 Comments
Today kicks off the start of Invisible Illness Week. It's not something you want to celebrate... but for some of us, it's an opportunity to share how we deal with chronic "invisible" illness, and help raise awareness for the diseases we fight every single day. It's called invisible, because to the average bystander, everything looks fairly normal. I'm not in a wheelchair. I'm not hooked up to oxygen or an IV bag. I don't have any major skin problems or injured limbs. But I do have a chronic illness called Wegener's Granulomatosis. {Read more about my illness here.} And this week I'd like to share with you some of the things I've learned along my journey with Wegener's. Things that [...Read More]
The Blessings of Healthcare – Day 8
November 8, 2011 By Leave a Comment
Living with a long-term illness is not easy. There are new limitations to be learned, new hindrances to face, new fears and worries to overcome. There are challenges to deal with every single day, every month, every year. For some, there is no hope of improvement. For some, that hope is for a distant day, so far-off it seems nonexistent. The struggle for joy and contentment is painfully real, as is the never-ending battle of trusting God and casting every care on Him. [...Read More]
My ‘Invisible’ Illness
September 19, 2011 By 14 Comments
I discovered this morning that last week (Sept 11-18) was designated Invisible Illness Week. For people like me, who suffer from chronic illness but often hear the words "you look so normal." Or something like them. I have an "invisible illness." It is actually quite visible to my doctors, in the blood tests and other labs I regularly have to get. It is usually visible to those who know me well. But to the random stranger in Walmart, the new family at church, or the friend of a friend I meet at a cookout, it remains invisible. [...Read More]
Taking a Deep Breath {FMF}
May 14, 2011 By 3 Comments
Time for another Five Minute Friday. This week it's about ... Deep Breath Thinking about breathing reminds me of time not too long ago when breathing was a rather difficult thing for me. From December 2007 through October 2009, the times when I could breathe freely and fully were rare and sporadic. I had at least six surgeries during those 23 months to enlarge my airway... At first the doctors didn't even know what was wrong with me. I tried specialist after specialist, medication after medication, and nothing helped. I couldn't breathe. Simply getting out of bed in the morning made me huff and puff for air. Making the bed and showering was like running a marathon. Playing the piano was [...Read More]
