Life before 2008 24 Aug 2007 10:32 am
Life with Chronic Disease may require a change of mind…
I am used to a mindset of “cures”. “Getting better”. “Do this and it will equal that”. What I’m finding with Crohn’s Disease and Ulcerative Colitis, from numerous books and personal testimonies, is that this is different than just about anything I’ve managed before. Even with our daughter’s heart defect, we could be reasonably sure that certain meds would produce certain results. Surgery would be needed at definite benchmarks. When we have a cold or a virus, it’s pretty straightforward: drinking lots of water loosens congestion. Take a pain reliever for a headache. Get some rest. It will go away.
But chronic disease? Well, it seems highly individual. Some go into remission, some do not. The two could have done the exact same things and just gotten a different result. Lactose-free helps some and not others. Ditto controvery over fruit/no fruit, fiber/no fiber, antibiotics for maintence/or only for flare ups. “Diet matters somewhat” said my doctor, who prescribed a soft-foods, lacto-free diet but saw nothing amiss with a chicken breast, bacon, and margarine on a previously empty stomach.
The truth is…..no matter what we do, he could get sick again. Take all the meds on schedule, do a home stool-blood test regularly, eat a pure diet…it’s a disease, not an allergy or obesity issue. He looked great for two years but was developing thousands of dangerous ulcers at the same time.
So I’m making a grocery list with the best of what I’ve been able to read about, already know, and have been told by those who live with their own conditions. I’m trying not to be afraid of drug side-effects and lurking dangers from ulcers and inflammation that may not be overtly obvious until they are quite serious. I want to believe that enough effort (a) + the right diet (b) will equal = a cure (c). And I’m not sure that’s what life is going to look like anymore…
I’ve been thinking a lot about my title question, “What if you wanted to change your life?”. We never are able to control everything that comes into our lives…and that isn’t what I’ve ever wanted this blog to be about anyway; the controlling of what comes “in”. Rather, it’s deciding how best to live with what I can change. What I do have some say over…and right now, it’s not that chronic disease has come into our lives but instead, the question is how will we change what we can in order to support what we can not. I’m reminded that Living Deliberately does not mean living without spontaneity or surprise or even calamity; it means we can intentionally adapt our habits so as to live responsibly, with dignity, grace, and gratitude.
Onward~
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on 24 Aug 2007 at 2:24 pm 1.Lori in Nj said …
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
on 24 Aug 2007 at 10:57 pm 2.Queenofthehill said …
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.)
on 30 Aug 2007 at 9:27 am 3.Traci said …
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.