Sharon Saeed’s Strength in Numbers

http://www.youtube.com/watch?v=DMkVAPAGt0Yhttps://www.youtube.com/watch?v=DMkVAPAGt0Y

this is a video made by my friend Sharon Saeed. she is paying homage to those whom lost their battle to ibd, and calling us with inflammatory bowel disease to action to put the medical community on notice because we are many, we deserve a cure and that there is strength in numbers.

Joshua E. Robinson

joshuaerobinson

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

This is a new blog post by my friend Megan Starshak of the greatbowelmovement.org

Making It Work with Crohns or Colitis

by The Great Bowel Movement on July 9, 2012 in Coping With IBD, Owning your Disease

Just another day at the office.

Many of us are diagnosed at a young age. Our parents to take care of us, to drive us to the doctor, to write a letter to our teacher, and to make us our favorite tummy-friendly meal. We go to school and although it’s hard and the other kids don’t always sympathize, we know our teacher will understand if we have to take a long bathroom break. We go to college and find that we don’t have to raise our hand to go to the bathroom. We miss class when we need to, make up the work when we can, and spend the day between the toilet and the couch. We graduate and everyone is proud of what we have accomplished in spite of our conditions.

And then we get a job.

It’s challenging enough, in our current market, to find a good job, or even land an interview. Gone are the days of growing our identities through our IBD experiences, and asking for exceptions whenever they are necessary. Last time I checked, no one was getting paid just for beating a disease. The job-searching, and job holding processes can be very stressful and complicated without a disease, but with something like Crohn’s or Colitis, the obstacles can be multiplied.

Just graduated? Tips for your first job search with IBD.

When going through the interview process, be aware that there are laws to protect you, including discriminatory protection based on disease. It is also illegal for a potential employee to ask you if you have a disease such as IBD during this process. However, it’s generally a good practice to avoid the topic of illness during this stage. Sometimes, potential employees won’t hire you because of potential future complications and threat of discrimination. Jennifer Jaff, of Advocacy for Patients with Chronic Illness, discusses your rights in detail:http://www.advocacyforpatients.org/legal_disabilities.html

In the workplace though, it can sometimes be unavoidable to disclose your condition with your coworkers or superiors. Perhaps you have to request a private bathroom, or explain why you keep extra pants in your bottom drawer, or avoid most of the food at the company picnic. At my first office job, I had to explain why I might be running late (my colon had a non-negotiable appointment with the toilet, every morning at 7:40 sharp, and for approximately 15 minutes) and pray that my boss would believe me. I also snuck a book of crosswords into the office bathroom for those extended bowel movements during the day. On the other hand, I have been asked in interviews about my biggest accomplishment, and I couldn’t help but tell my story of learning to live with Colitis and completing the Get Your Guts In Gear bike ride for the first time.

First of all, here are some tips for dealing with IBD at work:
1. Map out all the bathrooms in your building. Figure out which ones are cleanest, least busy, and never run out of toilet paper!
2. Show your colleagues and superiors that you are motivated and capable before you let them know about your condition. When you bring it up for the first time, accentuate the positive, like overcoming challenges and being inspired. Make them love you before you discuss your disease, and make them love you more for your strength!
3. Keep some trade journals in your bathroom. This way, you won’t feel guilty about spending too much time in there, especially when its unavoidable. Also, if anyone else sees your magazine stash, they’ll see you are serious about your job despite your frequent bathroom trips!
4. Learn that Crohn’s or Colitis is not an excuse, and live by that. Your co-workers will quickly catch on that you are serious about your coping skills. Also, you one day may need to use it as an actual reason for something- and having people accept this, even when they likely will not understand- and your integrity will be your biggest ally.
5. Keep clean underwear, and maybe even pants, in your desk drawer for emergencies. Pick some out that make you happy- maybe they are cute, fun, or extra comfortable. This way, when you need to call on them for backup, it will be something you’re excited to change into when you feel pretty gross!

All of us have likely developed our own set of coping skills. (Please leave your personal tips in the comments!) A lot of these skills have developed from our experiences of living a chronic illness driven life in the real world. Too familiar are reactions of people who just don’t understand, or don’t even care to hear, about Crohn’s and Colitis.

The professional environment is no exception to misunderstandings. When you do decide to discuss your illness at work, you may be met with unfavorable reactions, and the instant opinion that IBD will inhibit your work ability. But as people seasoned in dealing with IBD, we know that although it is a tough journey, it can make us better people! Here are some specific workplace reasons why IBD can actually benefit your workplace value! Feel free to discuss these with your co-workers, or just become a living example.

1. People with Crohn’s and Colitis know what it really means to be sick, and they understand that they may need to save sick days for when they are desperately needed. The also generally monitor their overall health more closely than the average worker. Because of this, IBD patients may actually have better attendance records, and not call in for minor reasons like a headache or a sniffle.

2. IBD patients have dealt with pain and discomfort on a larger scale than most. Have you noticed that after your experience, or a tough flare, that getting back to normal seems like the greatest thing ever? The tiny bumps in the road become insignificant, and are easily handled. IBD teaches you “ don’t sweat the small stuff”.

3. A moderate or severe flare may render IBD patients in the hospital for a few days or longer, or even just mandate staying at home, in bed, and close to a toilet. This experience is extremely motivating to make the most out of our lives, talents, and energies, for when we are feeling better.

4. A good dose of Crohn’s or Colitis can be a major motive in restructuring priorities. Building trustworthy relationships, job loyalty, and career success can be satisfying results of a job well done, not to mention steady health insurance. Also, the experience of IBD can lead us to desire more meaning and purpose in our lives. This also fuels our desire to accomplish something in our jobs, aside from merely climbing the corporate ladder and chasing a bigger paycheck.

5. Crohn’s and Colitis are full of challenging situations. Sometimes, these can be minor, and sometimes larger. Sometimes there is no choice but to deal, and sometimes they are life-changing decisions, like whether or not to have surgery. Learning to deal with these can teach us how to face challenges like a pro, even when others may back down.

While work is just one aspect of our lives, we do spend a lot of time there. A steady income and source of health insurance are nearly always necessary. Yet we will always have challenges to overcome in this environment, and rising to the challenge, becoming a positive example of someone living with IBD, and spreading awareness will collectively help all of us reduce these challenges.

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

#GetYourBellyOut

Repost from my friend Victoria Marie from across the pond.

Victoria Marie‎

Crohn’s And UC Support One Another

After months of planning its **TIME FOR THE #GetYourBellyOut CHARITY CALENDAR COMPETITION!!**
Raising awareness for Crohn’s Disease and Ulcerative Colitis!
For all of the rules and information on how YOU can take part…click here>

http://sahara88uk.blogspot.co.uk/2014/07/would-you-like-to-feature-in.html
Does anyone fancy the challenge? Xx

**Please note** EMAIL ALL PHOTOS TO sahara

NO POSTING YOUR PHOTOS ONLINE PRIOR TO THE VOTING COMMENCING

Thank yoooo Xx

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

Fatigue and Chronic Illness

What is Fatigue and why do I want to talk about it? Simple response, it affects me and most of my “Chronic Babies”! Well okay all of them!!! But everybody gets tired, right, well yes, but we the IBDer’s, the Lupes, the MSer’s, etc, wake up in the morning already exhausted. Why? Well you know when you get the flu or a cold how tired you are, that is because your immune system went into overdrive to fight off whatever has sickened you, you already know this. Because your body’s immune fights, wins then goes back to normal, right? Right. For whatever reason and this is a big unknown, the immune system of a chronically ill person decides it’s owner is the enemy, and you begin fighting yourself, double jeopardy, you are trying to kill you. Your white cells are attacking your red cells, red cells, white cells, white cells killing good bacteria. UGH,,, I’m Tired!!! I have wiped myself out!!!

Joshua E. Robinson

joshuaerobinson

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

I lie almost everyday

This is very good and pretty much applies to all with a chronic illness.

gut-wrenching truth about crohns

Today tested my character and broke me down. I am tired of lying. I lie so I must be a terrible person right? Maybe.  Let me explain and you can judge me later.

You: How was your weekend?

Me: It was good. I just lied to you. I sugar-coated my weekend because honestly you don’t want to hear the truth. You don’t want to hear that while it was wonderfully beautiful outside I spent most of the time curled up in a ball fighting the pain in the pit of my stomach and nausea that creeps up whenever it feels like it. (I have Crohn’s disease and that sometimes is my typical weekend.) I also sucked that up for a few hours to work my second job to pay my mounds of accumulating medical bills.

See, you didn’t want to hear the truth. I don’t know why people…

View original post 373 more words

Helping Myself and Others

So where have I been, what have I been up to, why have I not been blogging? Well I

have been very busy working on the planning committee for my Take Steps walk as well

as fund raising for my team, Grafton Gutsey.

This is the few months out of each year that I feel I am make a difference by helping

myself and others with IBD. Take Steps is The Crohn’s and Colitis Foundation of America’s

major fund raiser for education, research and hopefully someday a cure for IBD. It is also

a great time to raise awareness, when I was diagnosed in 2008, I was so glad, it had a name,

I could be fixed, wrong. I had never heard of such a thing, Crohn’s disease, I would have

probably ran away from someone like me talking about it because of its nature, it’s has

some pretty gross aspects.

As I said I had never heard of Inflammatory Bowel Disease, however over the last 5-1/2 years

I have learned it is so much more than a pooping illness, it affects your entire body and can cause

major depression. Chronic diarrhea, crippling joint pain/arthritis, blood loss, exhaustion, hair

loss, depression, bone loss, malnutrition, death, I could go on for hours. So anyway that is what I have +

been up to, planning, fund raising, awareness and working for a cure because right now there is no cure.

Joshua E. Robinson

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

The CCFA ask me for a letter…

Hello All,

My name is Josh Robinson, I have Crohn’s disease. Crohn’s disease is one of two conditions known as inflammatory bowel disease, the other being ulcerative colitis. On December 24, 2008 inflammatory bowel disease change my life, I thought I was getting the flu and many months later, after nearly dying I received my diagnosis. Five plus years into my illness I still have not achieved remission, but I have come close. The fact that this disease is still such an unknown and incredibly difficult is why I am helping with the fight to find a cure for future people.

IBD has symptoms that are unpredictable on an hour to hour basis including diarrhea, frequent nausea, skin problems, eye pain and joint pain. My life and my family have been affected greatly by my illness. Other than work I rarely leave home due to this disease being so painful and unpredictable. Inflammatory bowel disease affects 1.5 million Americans and over 5 million people worldwide, this is far too many folks to live this way.

However, you can help with this cause! The Crohn’s and Colitis Foundation of America (lmccann) to help with this very important mission.

Thank You

Josh Robinson

joshuaerobinson

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

Newly Diagnosed with Crohns Disease or Ulcerative Colitis

I want to share some things I wish I knew with any of you who may be newly diagnosed with Crohns disease or ulcerative colitis or know someone who is:

1) There is no right or wrong way to treat Crohns disease or ulcerative colitis. Do what you feel is best for you, your body, your mind and your life. Things can always be adjusted.

2) Inflammatory bowel disease always plays with your emotions, always right in your face. The ups and downs are really challenging which is why a great support system is key and reaching out for help when you feel like you need is crucial. It is okay and healthy to ask for help. Crohns disease and ulcerative colitis are VERY difficult illnesses to live with.

3) Make friends with other people who have IBD…. Even if it just browsing through support pages on Facebook or Twitter, it allows you to see that you aren’t alone and that, for me personally, has been one of the greatest things for me to know with this incredibly isolating disease.

4) You didn’t develop IBD because; you didn’t eat the right foods growing up, you aren’t a person who doesn’t handle stress correctly, you aren’t harboring childhood trauma or have an inability to “let go” of the past. If someone that doesn’t have Crohns disease or ulcerative colitis says these things to you, they are placing blame on the patient which makes an already difficult illness even harder to cope with, much harder. There is NO REASON. It is NOT YOUR FAULT.

5) Listen to your body and trust yourself. Always. No exceptions.

A little over 5 years ago I was about to embark on the most physically and emotionally challenging experiences of my life. I had no idea what I was in store for but I know I couldn’t have made it this far without the support of my family and friends. I have met some of the most amazing people in person and online whom have become truly irreplaceable friends. They, along with my family, have made me realize that no one should have to go through this journey alone, no one.

From me Josh,

Months ago I found and saved this, I do not know who wrote it now (all credit due) and have changed it a little. This person’s advice is so true and something I wish I had had nearly six years ago.

joshuaerobinson@comcast.net

~my life is a work-in-progress….i’m perfectly content with that~

Homemade Yogurt

How I Make Homemade Yogurt

Josh Robinson 02/14/2014

1.) Bring 2quarts of milk, (whole, raw, 2%, 1%, goat, whatever just so it is animal milk) in a large sauce pan to the temperature of 185 degrees, being careful not to scorch.

2.) Remove from heat and let cool to approximately 110 degrees.

3.) I use an electric 2 quart yogurt maker. Although you can use a large plastic bowl placed in the oven with the light on.

4.) Put 1 cup of non flavored commercial yogurt, I use Greek, in the yogurt maker or bowel, mix 2 cups of cooled milk in with the yogurt and mix.

5.) Mix in the remaining milk with the mixture and mix well.

6.) Plug in the make or place the covered bowl in the oven with the light on.

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7.) After 24 hours place internal bowl of yogurt maker or your bowl in the refrigerator wait 6 hours and enjoy.

SCD Yogurt and very IBD / Autism / Celiac Safe

YUMMO!!!

my life is a work-in-progress….i’m perfectly content with that~

Take Steps 2014 video

Hi All,

I thought all of our committee members might enjoy this video. It’s our 2014 Take Steps promotion.

You are all welcome to use it and share in your emails, on your facebook posts, twitter tweets etc.

Enjoy! Have a wonderful weekend~

Lori J. McCann Walk Manager Crohn’s & Colitis Foundation of America Western Pennsylvania/West Virginia Chapter 300 Penn Center Boulevard, Suite 401Pittsburgh, PA 15235 Tel: (412) 823-8272Cell: (412) 417-8599Fax: (412) 823-8276 lmccannwww.ccfa.org

Our Mission: To cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases ~my life is a work-in-progress….i’m perfectly content with that~ .