Comments on: Life with Chronic Disease may require a change of mind… http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/ Conscious Living....Deliberate Living. Deciding what I want to strive for and then setting goals to get there... "But the dreamers of the day are dangerous people because they think their dreams into reality with eyes wide open." Sat, 22 Nov 2008 05:25:23 +0000 http://wordpress.org/?v=2.5 By: Traci http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/#comment-21114 Traci Thu, 30 Aug 2007 14:27:31 +0000 http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/#comment-21114 My chronic disease (RA), brought on bouts of depression. I was completely unprepared for this aspect of my disease. After discussing it with a professional and learning it's all part of the process, I was able to build a new life structure. I live with the disease, I do not submit to it. Your post is a great encouragement. My chronic disease (RA), brought on bouts of depression. I was completely unprepared for this aspect of my disease. After discussing it with a professional and learning it’s all part of the process, I was able to build a new life structure. I live with the disease, I do not submit to it.
Your post is a great encouragement.

]]> By: Queenofthehill http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/#comment-20995 Queenofthehill Sat, 25 Aug 2007 03:57:30 +0000 http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/#comment-20995 After Princeofthehilltoo was diagnosed with hydrocephalus and had an Endoscopic Third Ventriculostomy -- which is Greek for "brain surgery" --at 8.5 months of age, I was SO afraid he'd fall and bump his head and undo it all. I went into conniptions if his big brother even LOOKED like he might touch his his head. Once, he pulled a Tiffany Lamp right down on his still-healing wound and I screamed so loudly I'm sure they heard me half a mile away! I called the Neurosurgeon's office weeping like an idiot and the nurse said "well, I hear YOU crying, but I don't hear HIM crying." Alas, Princetoo had recovered from the Tiffany attack at a much greater rate than I had. My nerves being shattered a hundred times a day, I asked the Neurosurgeon what the prospects were of putting a medical helmet on my UNDER one year old baby. He said, basically: "Lady, if your kid's hydrocephalus reoccurs, I can fix that. But if you screw him up by treating him differently, overprotecting him, and making him wear a helmet, well, there's nothing I can do about that." The point was taken. And though very hard for me to do at times, I've tried very hard not to treat the kid differently or make him feel in any way LIMITED by the chronic nature of his condition. He does wear a Medic Alert bracelet to handle the "uncertainty" angle, but we try not to let hydrocephalus define him. I think that's the challenge. The Prince is a fun, happy, friendly boy with hydrocephalus... NEVER a hydrocephalic. (Sorry for the length here.) After Princeofthehilltoo was diagnosed with hydrocephalus and had an Endoscopic Third Ventriculostomy — which is Greek for “brain surgery” –at 8.5 months of age, I was SO afraid he’d fall and bump his head and undo it all. I went into conniptions if his big brother even LOOKED like he might touch his his head. Once, he pulled a Tiffany Lamp right down on his still-healing wound and I screamed so loudly I’m sure they heard me half a mile away! I called the Neurosurgeon’s office weeping like an idiot and the nurse said “well, I hear YOU crying, but I don’t hear HIM crying.” Alas, Princetoo had recovered from the Tiffany attack at a much greater rate than I had.

My nerves being shattered a hundred times a day, I asked the Neurosurgeon what the prospects were of putting a medical helmet on my UNDER one year old baby. He said, basically: “Lady, if your kid’s hydrocephalus reoccurs, I can fix that. But if you screw him up by treating him differently, overprotecting him, and making him wear a helmet, well, there’s nothing I can do about that.”

The point was taken. And though very hard for me to do at times, I’ve tried very hard not to treat the kid differently or make him feel in any way LIMITED by the chronic nature of his condition. He does wear a Medic Alert bracelet to handle the “uncertainty” angle, but we try not to let hydrocephalus define him. I think that’s the challenge. The Prince is a fun, happy, friendly boy with hydrocephalus… NEVER a hydrocephalic. (Sorry for the length here.)

]]> By: Lori in Nj http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/#comment-20976 Lori in Nj Fri, 24 Aug 2007 19:24:19 +0000 http://www.sixredheads.com/2007/08/24/life-with-chronic-disease-may-require-a-change-of-mind/#comment-20976 Tia, I've recently learned so many of the lessons you're learning now as about 18 months ago our oldest child was diagnosed with Rheumatoid Arthritis. Lesson 1. Life isn't about fixing everything. Sometimes God wants us just to learn how to glorify Him in the midst of trial instead of spinning our wheels trying to avoid/get out of the trial. The trial was placed there by God to show His glory and to benefit countless people, starting with Wheaton, then extending to you, your husband and kids, extended family, friends, hospital staff...you get the idea. Lesson 2. Drug side affects are incredibly scary. Spend some time investigating the affects of the disease itself if left untreated. Knowing what the drugs are helping you avoid will make you feel so much better every time you put a nasty drug into your son's body. Lesson 3. Everyone has a story and advice. Learn how to weed out what is useful and what will just frustrate you in the long run. I will pray for you in coming days. It is hard to get used to having a child with a chronic disease, but it can be done. May God's will be done in the life of your sweet son. Lori in NJ Tia,

I’ve recently learned so many of the lessons you’re learning now as about 18 months ago our oldest child was diagnosed with Rheumatoid Arthritis.

Lesson 1. Life isn’t about fixing everything. Sometimes God wants us just to learn how to glorify Him in the midst of trial instead of spinning our wheels trying to avoid/get out of the trial. The trial was placed there by God to show His glory and to benefit countless people, starting with Wheaton, then extending to you, your husband and kids, extended family, friends, hospital staff…you get the idea.

Lesson 2. Drug side affects are incredibly scary. Spend some time investigating the affects of the disease itself if left untreated. Knowing what the drugs are helping you avoid will make you feel so much better every time you put a nasty drug into your son’s body.

Lesson 3. Everyone has a story and advice. Learn how to weed out what is useful and what will just frustrate you in the long run.

I will pray for you in coming days. It is hard to get used to having a child with a chronic disease, but it can be done. May God’s will be done in the life of your sweet son.

Lori in NJ

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