Posts filed under ‘Mental Health’

An Oasis for Kids with IBD

The Oxford English Dictionary defines “oasis” as the following:

“A place or period of calm or pleasure in the midst of a difficult or hectic situation; a place of relief, a refuge.”

When looking at this definition, it is clear that the Crohn’s and Colitis Foundation of America (CCFA) picked the right name for their camp for kids living with Inflammatory Bowel Disease, Camp Oasis.

“Camp saved my life. It was the first time in my life that I didn’t have to hide who I truly was,” Jessica Heirtzler said, a  23-year-old IBD patient who was diagnosed at age 8. “Everyone at camp- both campers and volunteers- taught me that Crohn’s isn’t who I am, but it is a part of me and I should embrace it. Camp Oasis helped me grow into a confident woman who accepts and loves herself for exactly who she is. I am now completely open about having Crohn’s disease and I have Camp Oasis to thank for that.”

Camp Oasis

As an adult I often think about my disease and what I miss the most. I always come to the same conclusion: normalcy. Camp Oasis helps kids who live with extraordinary circumstances feel normal.

Disney Channel Liv and Maddie actor Benjamin King, a Crohn’s disease patient, echoes this sentiment.

“Dealing with Crohn’s as an adult, I know how difficult it can be to cope with this disease. I can’t imagine how hard it must be for children to live with the debilitating pain and uncertainty Crohn’s and ulcerative colitis can cause,” King said. “As a father, I’ve seen firsthand the benefits that summer camp has on children. The existence of Camp Oasis to give children with Crohn’s and colitis a safe environment to come together and bond over a shared experience is tremendous.”

11895208_875551942530685_4867754905188014262_oWhile I haven’t personally experienced Camp Oasis, people I trust have expressed what a truly amazing, inspiring and therapeutic experience the week-long experience is for campers, counselors and volunteers. And while many Americans are trying to keep warm these days, it’s time to look forward to summer.

Applications are now open for Camp Oasis’s 2016 summer sessions. CCFA runs many 12 week-long camp sessions across the country, attracting not only campers but also hundreds of volunteer counselors and medical professionals. The best part is that CCFA underwrites 65 percent of the cost of camp attendance, and scholarships are available for campers-in-need. If this is where my Take Steps money is going, than that’s completely fine by me!

Below is a list of Camp Oasis’s 2016 summer sessions. Click here for more information about the program.

Camp Oasis of California
Session Dates: Monday, June 20th – Saturday, June 25th
Host Site: Camp Ronald McDonald for Good Times – Mountain Center, CA

Camp Oasis of Colorado
Session Dates: Sunday, July 10th – Friday, July 15th
Host Site: YMCA Camp Shady Brook – Deckers, CO

Camp Oasis of Georgia
Session Dates: Sunday, June 19th – Friday, June 24th
Host Site: Camp Will-A-Way – Winder, GA

Camp Oasis of Michigan
Session Dates: Sunday, July 10th – Saturday, July 16th
Host Site: YMCA Camp Copneconic – Fenton, MI

Camp Oasis of Minnesota
Session Dates: Monday, July 25th – Saturday, July 30th
Host Site: One Heartland – Willow River, MN

Camp Oasis of Missouri
Session Dates: Sunday, August 7th – Sunday August 11th
Host Site: YMCA Camp Lakewood – Potosi, MO

Camp Oasis of New York
Session Dates: Tuesday, August 16th – Sunday, August 21st
Host Site: Camp Scatico – Elizaville, NY

Camp Oasis of Pennsylvania
Session Dates: Monday, August 15th – Saturday, August 20th
Host Site: Camp Nock-A-Mixon – Kintnersville, PA

Camp Oasis of Texas
Session Dates: Saturday, August 13th – Wednesday, August 17th
Host Site: URJ Greene Family Camp – Bruceville, TX

Camp Oasis of Washington
Session Dates: Sunday, June 26th – Saturday, July 2nd
Host Site: YMCA Camp Colman – Longbranch, WA

Camp Oasis of Wisconsin
Session Dates: Sunday, August 14th – Friday, August 19th
Host Site: Lutherdale Ministries – Elkhorn, WI

Camp Oasis of West Virginia
Session Dates: Tuesday, June 21st – Saturday, June 25th
Host Site: Camp Tall Timbers – High View, WV
11958296_875567895862423_2388311100840254785_o

*Photos via CCFA’s Facebook Page.

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January 15, 2016 at 10:12 am Leave a comment

Living in the in between

For me, the worst part of being the caregiver of someone with a chronic illness and also a patient myself is living in the “in between”- the grey area straddling the line of good and bad, healthy and sick. I am a bit of a control freak (I know, shocking) and get very agitated when I can’t anticipate what’s to come and can’t adequately plan for the future. Ask anyone who knows me- I am the captain of to do lists (and if they aren’t written neatly enough, I’ve been known to rewrite them) and timelines. Professionally, this makes me great at my job because I am always on top of my work and I can multitask incredibly well. But personally, it is a huge source of angst.

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June 9, 2015 at 2:16 pm 1 comment

2013: Year in Review

Happy New Year’s Eve everyone!

This past year has been an exciting one for Dan and I, both online and offline. In the past year, Caring for Crohn’s & UC expanded incredibly- while I wrote far fewer posts than last year, the blog received over 19,000 views and gained This year, Caring for Crohn’s & UC exploded beyond my wildest dreams, having over 19,000 views by over 10,000 visitors, and gained 45 WordPress followers, 9 Tumblr followers, 131 Facebook fans and 213 Twitter followers. (Disclaimer: I am a huge analytics nerd, so please forgive me for being so excited over these numbers :-)) Thank you all SO much for your continued readership and support- while I haven’t kept up with posting as frequently as I want to, I am so happy that the content I wrote over the past two years has reached so many of you. It’s all in the name of raising awareness and educating others about inflammatory bowel diseases.

Enough about the numbers- here are some of my 2013 highlights.

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December 31, 2013 at 11:24 am Leave a comment

Not Just a Pooping Disease: 10 Things You Didn’t Know About Inflammatory Bowel Disease

I recently had the privilege of working on a piece for the Huffington Post with Stephanie from The Stolen Colon for Crohn’s Disease and Ulcerative Colitis Awareness Week. The piece posted today and I wanted to share a snippet from it with you:

These diseases have been known primarily as “pooping diseases” because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.

Here are 10 things you didn’t know about IBD:

IBD patients often take many medications with powerful side effects.
Patients with IBD often depend on medication to control the inflammation and pain caused by their disease. Medications commonly used include antibiotics, anti-inflammatories, steroids and immunosuppressants.

While beneficial, these medications can cause side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

IBD causes extraintestinal issues.
Crohn’s disease and ulcerative colitis can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

IBD can have significant impact on the mental health of patients.
According to Oak Park Behavioral Medicine, about 25 percent of people with IBD will experience depression even when in remission, and that number rises to 60 percent during a flare. Outside of depression, the Crohn’s and Colitis Foundation of America reports that patients with IBD often experience anxiety, denial, dependence, stress and poor self-image.

Having IBD is exorbitantly expensive.
The annual direct cost of Crohn’s disease and ulcerative colitis in the United States is estimated to be $6.1 billion. A recent study showed that the mean annual cost for a patient with Crohn’s was $8,265 and for ulcerative colitis was $5,066. Each patient’s situation differs, but the most common costs of IBD include diagnostic tests, hospitalizations, surgery and medications, some of which can cost as much as $10,000 per dose.

You can view the full piece here.

December 6, 2013 at 4:51 pm 3 comments

Losing My Religion

Disclaimer: This post addresses a topic that is sensitive for many people- religion. I want to make sure that people know I am in no way trying to advocate for or against any specific religion or trying to preach to you that your beliefs are wrong. Instead, I am just expressing my frustrations with my current relationship to Judaism.

When I was younger, I used to have nightmares during Yom Kippur.

I was taught in Hebrew School that on this day, G-d decides if you live or die in the next year. I took this so literally when I was young, praying to be inscribed into the book of life, actually afraid that I might die in the coming year.

I grew out of that phase quickly but from it I took a genuine interest and appreciation for religion.

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September 17, 2013 at 7:37 pm 2 comments

Anxiety is My Invisible Illness

There have been so many great blog posts for Invisible Illness Week about inflammatory bowel disease that I didn’t have anything else to add! So I decided to go another route and let you all know about who I am and my invisible illness.

There are days where I feel like I am completely losing my mind, where I am so overcome by negative thoughts and desperate for some relief that I wished someone would hospitalize me. Days where the thought of eating, going outside or even talking to my husband make me want to crawl into a cave and hibernate. Days where I am so on edge that I snap at people who I love and people I don’t even know.

Many people don’t recognize that I am “sick” because they can’t see it. My sickness is on the inside, masked by years of practice of concealing any physical evidence of the illness, thus rendering it invisible. But just because you can’t see it doesn’t mean its not there.

The Diagnostics and Statistics Manual of Mental Disorders classifies what I suffer from as code 300.02- Generalized Anxiety.

I’ve been living with generalized anxiety and panic attacks for most of my life. I was always an anxious child – the one who clung to the fence in the schoolyard in first grade screaming about not wanting my parents to leave me alone at school. I was the child who would come home from sleepovers at 11 p.m. because of overwhelming anxiety about being away from their parents, even if it was just down the road. I was the teenager who tried to go to sleep away camp on three separate occasions but called home every day in hysterics (I was never allowed to come home early though). I was the teenager who, after the suicide of her friend, was so overcome with grief and anxiety that going to school became too much to handle.

I was 16 years old when I was formally diagnosed with a generalized anxiety disorder. According to the National Institute of Mental Health,

“people with generalized anxiety disorder (GAD) are extremely worried about these and many other things, even when there is little or no reason to worry about them. They are very anxious about just getting through the day. They think things will always go badly.”

That’s one way of putting it.

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September 12, 2013 at 7:53 pm 2 comments

Come Friday, Patients Will Begin To Feel Impact of Sequestration

Sequestration is the buzz word lately.

With the $85 billion in spending cuts set to hit the government, and subsequently all Americans, March 1, it’s time to learn how this will really impact health care.

The unfortunate thing is that there are very few real details out there about the sequester, and as we all know, the devil is in the details. All that is available is estimates as to how it will impact federal agencies and the states as a whole. But there’s no doubt that health care in the country will suffer if our leaders don’t figure things out by Friday.

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February 26, 2013 at 9:40 pm Leave a comment

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