Posts filed under ‘Caregiving’

IBD Medical Terms in Plain Language

I was going through my Twitter feed the other day and came across something from Care Novate Magazine, an online resource that provides information on caregiving, social media and medical literacy. It’s a really cool idea and I spent awhile going through the site, which is how I came up with this post.

The most difficult part of living with a chronic illness like IBD is understanding what your doctors tell you. No matter how hard they try, medical jargon is still used in explanations, and a lot of the time, patients and their loved ones don’t fully understand what’s going on.

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February 11, 2013 at 7:33 pm 1 comment

Family Medical Leave & IBD

When Dan had his blockage in 2011, I was just starting a new job. I was four months in and hadn’t been there long enough to be able to take much time off. I was lucky that my employer allowed me to alter my schedule for two weeks to work from home and take time off to take care of Dan, but not all caregivers are as lucky as I am.

For those who don’t have flexible options for time off to take care of a loved one, there’s the Family Medical Leave Act.

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February 3, 2013 at 12:50 pm Leave a comment

The Essential Hospital Bag

If you have IBD, it’s inevitable that at some point, you will wind up in the hospital. Some stays might be for a few hours, some a few days, and for the unlucky ones, a few weeks or months. Regardless of how long you are in the hospital, there are some essentials to take with you to ensure that your patient’s stay, and subsequently yours, is as pleasant as a stay in the hospital can be.

If only it were this simple…

I’ve come up with a list based off of what I’ve brought to the hospital  the three times Dan has been hospitalized. Obviously, everyone has different interests so this list can be modified to fit anyone’s needs.

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November 27, 2012 at 5:26 pm 2 comments

What Not to Say to an IBD Patient or Caregiver

In the almost six years that I have been with Dan, many stupid things have been said to me about the disease. Usually, I just brush it off because I am not the one living with the disease every day.

This post comes after I read a piece in Health Magazine entitled “11 Things Not to Say to Someone with Ulcerative Colitis.” Crohnies hear the brunt of the dumb things that are said about the disease, but us caregivers definitely hear some also.

Below is a list of some of the things that have been said to me that you really shouldn’t say to an IBD patient or caregiver (or really anyone with a disease). Disclaimer: you may not agree with every one I put on the list. This is just made up of ones that annoy me (and I may become annoyed more than others). What is okay or not okay to ask  or say is totally subjective and varies person to person.

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November 5, 2012 at 7:47 pm Leave a comment

Article on Huffington Post about Crohn’s

I am SO excited to share with you all that a blog post I’ve been working on for a bit about taking care of a loved one with Crohn’s has been posted on HuffingtonPost.com!

I wrote about the complications Dan has had over the years and the various hospitalizations and how important it is to understand what is going on so that you are able to make informed decisions.

Here’s a snippet of the piece:

“Unfortunately, this wasn’t the first emergency hospitalization that I went through with my husband or the first one where I feared for his life. One year earlier, following a routine colonoscopy, my husband spiked a 104-degree fever 30 minutes after coming out of anesthesia as we were preparing to be discharged. He ended up spending five days in the hospital with an E. coli infection caused by a small puncture made by the scope during the procedure. I learned quickly during my husband’s first hospitalization how important it is to ask questions. I am my husband’s sole caretaker — I am responsible for ensuring that the doctors and nurses are doing everything they can to treat him appropriately. However, without being a doctor, there is no way for me to know what the right course of treatment is without asking questions.”

You can read the full post here.

August 15, 2012 at 1:46 pm Leave a comment

The healing power of pets

I’ve known for a long time that pets (dogs in my case) can sense when something is wrong. When I’m upset, Bomber, my Shetland Sheepdog, will climb in my lap and act super cute to cheer me up. That’s the reason I love pets so much- they provide you with so much love and comfort in ways that human companionship doesn’t. I mean, it would be pretty weird if my husband crawled into my lap and acted cute when I was sad, right?

Bomber has done wonders for Dan. Growing up, Dan never had a pet but loved dogs. When we started dating six years ago, I had a Shetland Sheepdog who was the sweetest little fuzzball, and Dan adored her. We both knew we would get a dog, but we didn’t know when. And Dan surely didn’t know how profound his impact would be on his life.

My old dog Taffy

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August 10, 2012 at 6:30 pm 1 comment

Turning lemons into lemonade

I grew up turning everything into a joke.

For example, when my mom was diagnosed with cancer in 2006 and lost her hair, we bought her a Du-rag and tried to get her to wear a Bob Ross Afro wig.

It’s no surprise then that Dan and I try to take on Crohn’s with a light heart and lots of jokes. It’s definitely hard at times to find the humor in our situation when there is so much bad (hospitals, medication, medical bills, etc.) but we do our best.

The three times Dan has been hospitalized, I have taken photos to chronicle the experiences. While it might seem a bit strange, it helps us to keep our moods up. We also make a lot of puns related to poop and the other things that go hand in hand with Crohn’s Disease and Ulcerative Colitis.

For the last three years, we’ve participated in CCFA’s Take Steps Be Heard walk and because of our jokes, it’s only appropriate that our team name is Shits & Giggles. This past year Dan was the honored hero at our walk AND we were the first place fundraiser on the day of the walk!

If I could give one piece of advice to all those either suffering from or taking care of someone with Crohn’s and Colitis, keep your spirits up and try to laugh. It’ll help make the bad times be a little brighter.

What do you do to make Crohn’s not hurt so much?

July 17, 2012 at 12:32 am Leave a comment

Worrywart

I might be crazy but every time Dan says he has a stomach ache (which is pretty frequently), I am reminded of the dreadful night last year when he woke me at 2A.M. to go to the emergency room. That night we found out he had a blockage. Now, every time he has pain in the same area, I worry it’s another one.

I know the fear is irrational since he had surgery last year to remove the narrowing that caused the blockage (will go into that in a later post) and he has a wide open passage. But it still scares me.

Anyone else out there worry like that?

July 13, 2012 at 12:56 am Leave a comment

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The Caged Bird Still Sings

Striving to be content with the life I have been given, instead of the life I had imagined

Brian Greenberg

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