Comments on: Living with a chronic illness

By: Journeyer

Journeyer — Thu, 19 Jun 2008 21:12:43 +0000

Very good advice Greg. I need to become more familiar with my pharmacist. I hope you and your pets are all doing well. Thanks for visiting.

By: Greg

Greg — Thu, 19 Jun 2008 17:21:52 +0000

Organization is the key. Not only have I been living with a chronic illness for thirty years but now I have three of my four animals seeing specialists for what will be long term treatment.

I’ve got schedules for my medication and the animals and I check it off every day once the medication is given. I feel like I’m running a nurses station, but it alleviates the anxiety of missing a dose and it protects me from wondering if I took, or gave, the medication.

It’s vital that every doctor know every other doctor you’re seeing and all the medications you’re taking. Most likely the only person who has a full picture of your meds is your pharmacist. Make friends with the pharmacist. Get to know them on a first name basis. Since they are the air traffic controller of your medication and their specialty is pharmaceutical interactions they will catch a potentially dangerous sooner than your doctor.

Find time in the day to quiet your mind. Create a health support team of neighbors (if appropriate), babysitters, etc. so that when things arise it’s one less hassle. It’s all about creating ease.

By: Journeyer

Journeyer — Thu, 19 Jun 2008 12:30:09 +0000

Thanks for visiting Laura. I’m sorry your daughter has been unwell. Your binder sounds like just what I need. I’ll check if our library has that book. It sounds like it could be very interesting.

By: Laura

Laura — Thu, 19 Jun 2008 11:59:42 +0000

My daughter has had a lot of “mystery” medical challenges the first few years of her life and we’ve moved to a new state in the middle of it all and changed doctors several times looking for any help/answer. To keep track of the history, medications, tests run/results, medical records, history of doctor contacts, etc., I created a three ring binder with all of it organized with tabs. Anything that happens goes in that binder and in case of a fire, etc., next to getting our kids and our laptop (with all our pictures on it) out, that binder is next on the list of high priority. It may seem a little retentive to create something like that, but when you’re dealing with something chronic, I’ve found at least, that doctors (the good ones) really appreciate the organization and up front/quick information.

I just picked up a book at the library called Broken at the Strong Places – it’s a book about living with a chronic illness written by Richard Cohen. He chronicles the lives of five people living with various illnesses, from terminal to simply life altering. I’m only at the introduction, but so far, I really am appreciating it and the perspective.

By: Journeyer

Journeyer — Thu, 19 Jun 2008 07:59:17 +0000

Good thinking Mark. I’d never considered the accident scenario. I was worried I was being a little bit anal with the dossier idea. I have medication details in a folder at home, but maybe a detailed portable version is the way to go.

The research and testing that goes into treating chronic diseases is just phenomenal. I’m totally in awe of the people involved and fascinated by it all (not that I can understand 1/10 of it).