Health Activist Writer’s Month Challenge – Day 5 Aspiration

Apr5

“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?

This is a good topic because it helps me to put out there just what I want to do as far as my activism. My goal when I started was to help out others that were in my position, which is growing up alone. I wanted to let people know that they aren’t alone out there with their disease. For years, because I was alone, I kind of ignored my disease. Now that I know there is a huge community out there, I have owned up to it.

So if the sky was the limit and I could do anything I wanted….first I would create a charity (which I am slowly working to do). The main purpose of the charity would not be to find a cure. It wouldn’t be to unite people with IBD. There are so many other charities that do these things. My goal is education. I want to help bring information about IBD to both patients and the general public. I don’t want to say too much about my dreams as I am trying to make all this happen.

Right now, when someone gets diagnosed, the doctor briefly explains what the patient has and then leaves. He might have some handouts that will also briefly describe the condition. After that, the patient is on their own to do the research and seek out help. That is where I would come in. I want to have a way where that person can turn to the charity and have all the info they want right at their fingertips. The info wouldn’t just be of the informative nature. The charity would also help him connect with others both online and in real life with other IBDers. It will help them find doctors in their area. Basically it will be the go to be all for IBD.

Now, I know I can dream big. Reality is so much harder. I have been going at this alone and it isn’t easy. So I am going to use this post as a call. If you are reading this, and you want to get involved and be part of this great movement, let me know. The more help I can get, the faster this dream can be a reality.

Health Activist Writer’s Month Challenge – Day 4 Sharing Resources

Apr4

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!

I won’t say much here today. I am going to let my fellow activist to all the talking. So here are some links to some great people and great sites. Some you might know, others you are finding for the first time. Enjoy.

Inflamed and Untamed – www.inflamed-and-untamed.com

Blood, Poop & Tears – www.bloodpooptears.com

The Great Bowel Movement – www.thegreatbowelmovement.org

The United Colon Blog – www.ucvlog.com

I Have UC – www.Ihaveuc.com

Girls with Guts – www.girls-with-guts.org

The Crohn’s and Colitis Foundation of America – www.ccfa.org

Love For Mutant Guts – www.loveformutantguts.wordpress.com

Intense Intestines – www.intenseintestines.org

Chronology – www.chrohnolgy.com

Karen Langston – Mind, Body, Soul – www.karenlangston.com

Crohns Disease Warrior Patrol – www.crohnsdiseasewarriorpatrol.org

My Journey With Crohns – http://www.myjourneywithcrohns.com

The Crohn’s Diaries: Living Sick with Inflammatory Bowel Disease – http://livingsick.com/

There are so many more that I could put down, but I would be typing for days. So go check out these sites and from there you will find many others. Have fun and let them know how you found them.

Health Activist Writer’s Month Challenge – Day 3 Wordless Wednesday

Apr3

Post a picture that symbolizes your condition and your experiences.

Health Activist Writer’s Month Challange – Day 2 Introductions

Apr2

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

Hello. My name is Jeffrey and I am a Crohnie. Well, that is how I would imagine an introduction would go in an anonymous IBD support group. Of course, an intro like that kind of has a negative stigmatism to it because it reminds us of intro’s used in AA which, even though it is a good group, you go there because of an addiction.

Well, having IBD is kind of like an addiction. It is something always on our minds. We take drugs to forget the pain we are in. And no matter how much we want to forget about it, we seek out others who have the same so we can relate and fit in. But, IBD is NOT bad.

That is #1. IBD is not something we can control and it is not contagious. IBD is an auto-immune disease and we have no control over it. Like many addictions, IBD is condition that happens and we have no control on how it will act. We can try to manipulate it with medicine, exercise and diet but it will ultimately act however it wants. It is the body attacking itself so there is nothing that will spread to someone else when you cough, sneeze or bleed. You can’t give it to someone else. It is a genetic disorder that needs a lot more understanding.

#2 – People with IBD at times are in a lot of pain. There are different types of disease under the IBD umbrella. They all act differently and there are different severities to them. But over time, anyone with IBD will experience pain. The worst thing about this is that the casual observer may not know this as you can’t tell just by looking at someone. People with IBD get good at hiding their pain so you might not know just how much pain they are experiencing. But know, it is there.

#3 – A lot of people with IBD feel alone. They don’t know anyone else with the disease and because it isn’t a well-known disease, no one understands what they are going through. This lead me to my activism. I grew up alone and in the dark with my Crohn’s. There was no internet. It was hard to find information about IBD, let alone meet people who had it. Now with our global community, I have taken to the web to let as many people with IBD know that You Are Not Alone. Within the past year I have learned so much about my disease and met so many great people. This is the main reason I do what I do. I don’t want anyone to grow up in the dark. Whether you are 8 or 68, you are not alone with your disease.

#4 – IBD is not a death sentence. Many people with IBD feel like their life is over. For some that spend months at a time in a hospital, living a normal life seems impossible. For some, they have to live with a stoma and feel like they can’t live like that. From what I have seen and learned this past year, you can live a great life. IBD does not kill. I know I can get into a debate over this because IBD can cause other problems, which in turn can kill a person….but IBD alone will not end your life. You will survive. I recall words from a fellow activist who is currently struggling herself “You are strong, you can do this. You are a fighter”. IBD can and will cause depression but just know that you will live and get on with your life. Try not to focus on the past and all the problems. Instead try to look at what you want to do with your life and try to make it happen. Baby steps. Don’t try it all at once. But you will find that if you make the attempt, you just might succeed. The more you focus on the good, the less you will think about the bad.

#5 – IT IS NOT YOUR FAULT!!!! I think everyone with IBD at one point in their life looks in a mirror and asks why me. They try to look at what they did in their life to bring on their disease. Was it something you ate, or a procedure that you went through. As I have stated before, this is a genetic disease. You did nothing but be born with a gene. Nothing you did brought on the IBD. It just chose to rear its ugly head when it did. I have learned that instead of asking the Why Me question, I know ask, what can I do to calm the beast.

IBD really is a bitch of a disease. It is still largely unknown to the general public and a lot more research is needed. We need to bring more awareness to this disease. I speak up now to help educate others. If you meet someone with IBD, don’t be scared of them. Don’t ask how they are because odds are they won’t tell the truth. Deep down, they are probably hurting. Instead, give them a hug and be there for them. Listen to their words. No matter the age of the person, I think we are all still a scared little kid just wanting some comfort and to know that everything is alright.

Health Activist Writer’s Month Challange – Day 1 Getting Started

Apr1

HAWMC 2012 slider 2 resized 600

Here we go again. Seems like just yesterday I was blogging everyday for WEGO Health. Well, it is a new year and a new challenge. So, without further adieu, let’s jump right into it.

Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

I have to say I was torn on whether to do this or not. Last year I got burned out from writing every day and it kind of turned me off of blogging for a bit. When I got the email for the challenge I didn’t know if I wanted to participate. Now I read this question, and I know why I am doing this.

I got involved this year because when I blog, it isn’t always about me. What I write is more to inform and help others. I am doing what I do so others can learn and know that they aren’t alone with their disease. Yes, the stories are about me and my experience but I don’t tell them to be vain or brag. I tell my stories to inform others. I share my experience with LDN and Gluten Free so anyone thinking about them can see what it is like. I don’t even write to get recognition. I just want to help.

To answer the second question..I don’t view myself as a newbie but not quite a veteran either. I have been blogging for a little over a year now. I have gone from not knowing anyone online to being part of a great community. I have met so many great people and have even been told how my blog has helped them. Since I have been blogging almost every month since starting and already doing a Writer’s Month Challenge, I can’t say I am a newbie. For me this is now sort of repetitious. But I do it for you, the reader.

Now that you have read this, and if you read my blog often, I want to ask you a question. Why aren’t you participating? Well, for some of you, maybe you are. But for the ones that aren’t why not. Why not start blogging yourselves. I can say it is definitely therapeutic and helps in releasing stress. It is a great way to meet others in the same situation. And it is a great way to help others. If you do have a blog, leave me a message telling me what your site is. Share it with everyone. Let’s make our great community even bigger.

Crohn’s Disease Warrior Patrol: A Charity Is Born

Mar15

This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313 The article was written by Jaime Weinstein, a fellow online health activist

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

I was happy to be involved in this meeting with Damon. I felt like my part wasn’t that big and I was just doing what needed to be done. My original post about this can be found here https://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.

World Rare Disease Day

Feb28

Today is World Rare Disease Day. One of the first things I thought when I heard this was, “Do I fall in this category?” Yes I have a disease but is it considered a rare disease? Just because so many people have no idea what IBD is doesn’t necessarily make it rare.

According to the National Institute of Allergy and Infectious Diseases (NIAID), a division of the US Department of Health and Human Services that accumulates and publishes the statistics for Crohns disease and other health problems, one in 500 people suffer from Inflammatory Bowel Disease (IBD), the group of diseases that includes Crohns syndrome and ulcerative colitis. The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) reports similar numbers. Approximately 544,000 people suffer from IBD in the United States. There are typically three or four new cases per 100,000 people reported annually. – Article Source: http://EzineArticles.com/289309

Looking at those numbers, 1 in 500 people suffer from IBD, I would say no. But go online to a social media site like Twitter and anyone with IBD is proudly letting everyone know they are celebrating the day. As much as I love advocating for my disease and help bring awareness to it, is it right to drown out others trying to raise awareness for really rare diseases?

As I was pondering this at 8:00 in the morning, I was forwarded an article found here http://bites.today.com/_news/2013/02/27/17121375-restaurant-to-non-patron-you-must-pay-to-pee?lite This isn’t necessarily about any illness but anyone with IBD understands the problems with this kind of thinking. And that leads into how so many people don’t know about IBD.

So is it a rare disease because people don’t know about it? About 10 years ago most people probably didn’t know what HPV was. Now it is known that it is the main cause of cervical cancer. It wasn’t a known disease yet it was far from rare as it was determined that almost everyone that has had sex has at one point in their life had the disease.

I talk to a woman online who is pretty big in the IBD community. She suffers from a condition that causes inflammation all over her body. Everyday is a challenge for her. No one even knows how to treat it at this point because not that many people suffer from it. To me, this is a rare disease. This is something we should spend the day talking about and educating people on.

I love advocating. I love everyone I have met doing it. I talk to so many great people who have decided to speak up for IBD. We have a big community and we are becoming very vocal. But are we rare? I wish I could say yes, but we aren’t. I think we need to put our needs aside for one day and focus on those that really need help, because with rare diseases, there is little help out there. There are almost little amounts of treatments available and even less cures. For us with IBD we have a lot of options, even if they aren’t helpful. There are many that suffer with no treatments available. Today I will think of them and hope for some help. It is the least I can do.

I Have Reached My Boiling Point

Jan24

Yesterday I came across an article. It started because I was wondering how voting for the Restroom Access Act, aka Ally’s Law, went in Virginia. I looked it up online. I was appalled at what I had found. The act was defeated without a single vote cast. That means that every politician that had the right to vote on it agreed that it wasn’t worth their time to even discuss. I was outraged by this but was soon about to get even more pissed off.

Continuing my research I found and editorial written for a Virginian newspaper. It was written by Kerry Dougherty and can be found here. Please go read it. I will wait until you finish reading it.

…

So you finished it. I can see how red your face is. I guess she made you as mad as I have been for the past 18 hours. How can someone be so ignorant not only to people with IBD but to me it seems like she is against anyone with a disability.

But lets break down some of what she had to say. First, she writes, “And it marked the death of one more over-the-top, well-meaning measure cooked up by a Northern Virginia Democrat. Another bill that would have attempted to legislate common sense.” – First, does it matter if the person introducing the bill is a Democrat or Republican. What just because a Democrat introduces something it is immediately bad? Next, a bill that would attempted to legislate common sense. Yes, it is common sense and yet it is ignored. Why do we have to fight to use the bathroom. IT IS COMMON SENSE and yet people will still not let you use their bathrooms so yes we should have a law.

“The impetus was an Alexandria teenager who was diagnosed with Crohn’s disease about two years ago. After being barred from the employee-only bathroom in several retail stores, he told his mom he wanted a state law that would make it illegal to turn away someone with a legit medical condition.” Man, this just shows the author didn’t do her homework. HE TOLD HIS MOM—-Ally is a woman, not a man. I have spoken with her and she is amazing. Follow Ally here on Twitter. See, she is a woman.

“If only adults or civics teachers would teach kids that there are better ways to fix problems.” – Um, Ally found a problem and is fighting for the government to back her in her fight against injustice. What better way is there to fix the problem? I would love the author to suggest just one way.

Lastly, the author goes on to tell a story of how she was in a nail salon one day. A woman came in to the place, looking like she was in an emergency and asked to use the bathroom. Afterwards it turns out she stole some wallets. So, now everyone with IBD is being compared to thieves and criminals. None of us can be trusted. WOW!

I have seen a lot of prejudice in my life. I have seen discrimination. I have seen bigotry. This editorial takes the cake though. Just weeks ago the CCFA launched a campaign which so many of us agreed was way to light. It showed that we mainly use the bathroom and that there are no other problems. Maybe if they had used a more aggressive campaign, Kerry would have a better understanding of what we go through every day of our lives. I won’t get into it as that is a whole other post. But Kerry’s ignorance shows the need for more awareness. IBD is still mostly unknown. People think we are making up our symptoms.

Shame on you Kerry. Shame shame shame.

My First Real Attempt at Advocacy

Jan11

For the past year I have been doing my blogs, talking to people online and even participating in the CCFA’s Take Steps. Late December I decided to kick it up a notch.

I was reading a lot of stories online about people with IBD having to pull over on the side of the road to immediately relieve themselves because there were no rest rooms in sight. Now, this is of course dangerous and illegal. It can cause problems on the highways and can even get the person stopping killed by getting hit by a car.

So I am sitting there reading these stories and I start to think of my experiences travelling on the interstates. I think about how you can go for miles without any exits or rest stops. The wheels in my head started turning and I had an idea. I started first by emailing my state representatives. Of course I got no responsive. I asked for assistance from some people on line and they helped me with thoughts and getting a letter drafted. Lastly, I started a petition online.

You are probably now wondering what I am talking about. Well, I am now starting a campaign to get port a potties put on the side of interstates and thruways. The petition can be found here and if you live in the USA, please go ahead and sign your name to it.

Now, if you have stopped and read the petition, you probably have a lot of questions about it. Yes, there are security issues, sanitation issues, etc etc etc. I know there is a lot that has to be worked out with this project. I don’t discredit all that. This petition isn’t meant to be a simple solution fix. I meant for this to be the start of something. It is made to get the ball rolling and make people see that there are major issues on the roadways for people with IBD.

If you can, write your congressmen and senators. Let them know of the petition. Let them know that we are no longer going to sit by and be ignored. It is time for us to raise our voice and be heard.

My Take on the Escape The Stall Ads

Jan11

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.