As Healthy As I Will Ever Be Posted by jrobinjrob on December 14, 2013 I am as young as I will ever be… Actually As Healthy As I Will Ever Be.I have a chronic illness that will never go away, EVER! I have MS, I have Crohn’s, I have Fibro, I have Diabetes, I have a Cancer, I have Lupus, I have Chronic Pain and I have many, many more. (Speaking for friends too) These things I talk about, all the time, HOW CAN I Not??? I SOOO Wish I Didn’t Have To!!! (Awareness)!But do they make me??? I don’t think so!!! (I have a chronic illness, but it does not have me!!!)So what if I have a chronic condition, I may faultier sometimes and ask for some help as well, this makes me human!See I am not the super human I portray myself to be.But I Am, I Am What I Choose and not what this disease says I am. I will not let chronic illness beat me or define me…I am way tougher than me!!! Join me in the fight, spread the word about whatever illness you or someone know has received… I am Josh Robinson, Son, Brother, Husband, Daddy, Friend and Coach!!! I hope to inspire a few, just a few, because all we can do is inspire,,, just a few!!! A musician friend inspired this, he knows who he is, and no I do not have all of these diseases… This is a repost, re-blog whatever you want to call it
Tag Archives: loved ones
IRONMAN Chattanooga
Blogging this for a friend.
With the loss of our IBD warriors in a larger number and closer succession, the money raised by Sarah could be the money that finds the cure! For 1 out of 200 of us, we pray or whatever it is we do, for a cure daily.
I have decided to make a difference in the fight against Crohn’s disease and ulcerative colitis. On May 17, 2015 I will race in IRONMAN Chattanooga. This race consists of a 1.25 mile swim, 56 miles on the bike, and a half marathon of 13.1 miles. A total of 70.3 miles, but it will all be worth it because your donations will not only motivate me to the finish, but they will help us get closer to the cure. Won’t you please consider a donation today?
About Crohn’s disease and ulcerative colitis
Crohn’s disease and ulcerative colitis are both major categories of Inflammatory Bowel Diseases (IBD). IBD affects an estimated 1.4 million Americans. These chronic diseases tend to run in families and they affect males and females equally. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract and may affect any part from the mouth to the anus. Ulcerative colitis is a chronic inflammatory condition limited to the colon, otherwise known as the large intestine.
The Mission of the Crohn’s & Colitis Foundation of America is: To cure and prevent Crohn’s disease and ulcerative colitis through research, and to improve the quality of life of children and adults affected by these digestive diseases through education and support.
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
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!!! 🙂
Why???
This an awesome blog post. I get compared and complained about all the time myself.
Stress Related Flare
All people get stress and it affects them, all in different ways. Someone with Inflammatory Bowel Disease (i.e.; ulcerative colitis,
Crohn’s disease) it can be devastating and have horrifying consequences. We “Chronic Babies” try to avoid it like the plague, it can make use very, very physically sick.
For over a month I have been trying to get my script filled for Humira, I keep getting denied. My GI, Doc Cirolla, wrote me a script last month, and his office sent it in. He and his IBD nurse Michelle then explained that Doc is changing hospitals and is Doc C is taking the month of July off, but staff would be there. Sooo when I would talk to Accredo they would “oh yes you are good”! When I would talk to WVPEIA They would also say all is good, “Mr Robinson, there is no problem, you have eleven refills…. Well on July ninth my wife, Eva could see I was at the breaking point so she took over. She made all the same calls and even to my Abbvie nurse advocate, it all went smoother than silk. Awesome!!! It would be here Friday, July 18, 2014.
Today at work I got an e-mail, Friday, July 18, 2014, about 11:30am “Your prescription order cannot be processed at this time.”I went into a tail spin. First I got very angry, threw my note pad, then my glasses, stomped around cussing probably looking like an idiot to my co-workers Rob and Tim. Now they are very good friends and Rob has know me a long time,
neither have saw me like this, oh yes they let rant, rave and tell all about IBD bet,,, they have near saw this. The Josh Robinson
meltdown going to go into a massive “StReSs fLaRe” to late, I was over the brink.
I sure anyone that reads this knows what Humira is, but… Humira is a biologic drug made by Abbvie. It is used to treat Auto
Immune disease that cause horrible inflammation such as, IBD, AR, AS, and others etc. Anyhow it is pretty potent stuff, and it we because we are on the sickest end of the sick. So freak a little bit when we miss a dose, well this weekend, Saturday will mean that I have missed three doses.
Melt down in action… Anger, frustration, major head ache…. About this time Tim leaves the office to go get our lunch and about a half hour later when he returns I am full blown Crohn’s flare up. I have the chills, am sweating profusely, my hair hurts and my belly is rumbling and screaming. Eva, my lovely wife calls to tell me they were going to the ocean since it was their last day at the beach,
I remain calm while she talks. After she is finished telling all they are going to do, I told her what had happened and all about it, to which she says I need to get on the phone and try to figure it out. While talking to her I had to leave my spot because I was so upset, and just glad to her voice so I was crying. After a couple minutes I got a text from her saying she would handle it.
I text my wife all the info, however by this time I was flaring, in and out of the loo about 20 times in the hours of between 1:00pm and 2:15. Still feeling horrible I joke to Rob that I was ready for my scope because I am running clear, and was… hahaha… Thought was done with the really bad, bad stuff, Nausea hit and hit hard. I hated for my friend to have to listen to me barf over and over. This dang disease is so very embarrassing. The puking was sudden as it always is, and very violent, as it always is. I took several doses of phenegren, and finally it stopped. I felt horrible and Rob told me go home, to which I said no, I can this disease is part of my life and I had to move on.
About 3:40 we started doing end of day stuff, when Eva called. She explained everyone except the insurance company received my script and any practicing Doc can write the script. So Monday I will call my primary and see if they will send a script to the insurance company. So I don’t think this was a helpful blog, maybe more of a gripe. I do not know how to avoid unforeseen major stress, and it has only happened a few times since I have been a “Chronic Baby”, every time it does this happens to me.
Please any suggestions on how to deal.
Joshua E. Robinson
joshuaerobinson
In Your Darkest Moment Always Remember There is Still Hope!!! 🙂
Buy #GetYourBellyOut
Buy #GetYourBellyOut merchandise!
They are FINALLY here and we are SO excited!!
We are selling #GetYourBellyOut wristbands AND #GetYourBellyOut car stickers.
ALL profits will be donated toCrohn’s and Colitis UK
Firstly you will need to figure out the cost of your item PLUS postage and packaging.
P&P charges will be dependent on your location.
PLEASE NOTE: YOU MAY CHOOSE UP TO 8 ITEMS AND PAY POSTAGE AND PACKAGING CHARGES JUST ONCE AT THE RATES STATED BELOW. IF YOU WISH TO ORDER 9 OR MORE ITEMS YOU WILL BE REQUIRED TO PAY A SECOND LOT OF POSTAGE AND PACKAGING AT THE RATES STATED BELOW.
Cost per wrist band £1.50
Cost per car sticker £2.00
**PLUS**
UK P&P £1.25
OR
Europe P&P £3.20
OR
World Zone 1 P&P £3.80
OR
World Zone 2 P&P £4.00
Please see the chart below to find your location:
Payment instructions :
Go to https://www.paypal.com
Log-in to your Paypal account and you will will find yourself here
Click ‘Send Money’, as pictured above, circled in red at the top of the page.
This will then take you to this page:
To (Email address or mobile number)
ENTER lornahaymes@yahoo.co.uk
Amount
ENTER the total of your merchandise PLUS postage and packaging costs. Any extra donation you wish to make should also be added on here.
And check the ‘I’m paying for goods or services’ option (Paypal fee’s will be paid by us)
Then click ‘Continue’
NEXT, review your payment and SCROLL DOWN TO THE BOTTOM OF THE SCREEN TO CHOOSE YOUR DELIVERY ADDRESS. (This is the address that your merchandise will be dispatched to unless stated otherwise)
FILL IN THE ‘Email to recipient’ SECTION WITH THE DETAILS OF YOUR ORDER. (See image below)
Please include:
· The quantity of stickers and wristbands you are ordering and the cost
· The total postage and packaging cost
· Any extra donation amount (This will go straight to Crohn’s and Colitis UK)
AND….you’re done 🙂
If for any reason you cannot order via PayPal then please email lornahaymes@yahoo.co.ukto discuss alternate payment methods.
FINALLY….
The #GetYourBellyOut team would like to thank you
for supporting us and helping raise money for Crohn’s and Colitis UK!
PLEASE upload your merchandise photos to Twitter & Instagram using the #GetYourBellyOut hashtag
or upload them to our Facebook page.
Credit to Sahara Fleetwood-beresford for composing this blog post & helping with such an wonderful explanatory step by step guide to purchasing your #GetYourBellyOut merchandise!! Xx
Joshua E. Robinson
joshuaerobinson
In Your Darkest Moment Always Remember There is Still Hope!!! 🙂
#GetYourBellyOut
Repost from my friend Victoria Marie from across the pond.
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!!! 🙂
Is Crohn’s Disease Bad for Your Bones?
Is Crohn’s Disease Bad for Your Bones?
Having Crohn’s disease puts you at risk for bone loss, but that doesn’t mean osteoporosis and other problems are inevitable. Take action now to protect your bone health.
Medically reviewed by Niya Jones, MD, MPH
In addition to the primary symptoms that affect your digestive tract,Crohn’s disease can cause a secondary set of symptoms often related to low bone density and even bone loss or osteoporosis. In fact, as many as 30 to 60 percent of people with Crohn’s disease may have low bone density.
How can a condition like Crohn’s disease lead to bone loss? Your dietary limitations might mean that you’re eating a poor diet, or you might not be absorbing enough nutrients from the foods that you do eat. This can lead to calcium and vitamin D deficiencies, among other nutritional shortages. Vitamin D deficiency is also a side effect of long-term treatment with steroids for Crohn’s disease.
These deficiencies can, in turn, result in different types of disorders related to bone loss, including osteoporosis, osteopenia, and osteomalacia.
“Osteoporosis is a systemic skeletal disease defined as a loss of bone mass and is associated with the deterioration of bone tissue,” explains Ryan S. Carvalho, MD, an attending physician in the division of gastroenterology and nutrition at Nationwide Children’s Hospital in Columbus, Ohio. “Osteopenia is a condition where bone mineral density is lower than normal. Osteomalacia refers to a softening of your bones, often caused by a vitamin D deficiency; in children, this condition is called rickets.”
Are you doing everything you can to manage your Crohn’s? Find out with our interactive checkup.
In other words, osteopenia is the thinning of bone mass, which can eventually lead to osteoporosis. Osteomalacia results from a defect in the bone-building process, while osteoporosis develops due to a weakening of previously constructed bone, according to the Mayo Clinic.
Preventing Bone Loss Due to Crohn’s Disease
Though calcium and vitamin D deficiencies and the bone loss that can follow are common side effects of Crohn’s disease, they are not inevitable. Here are steps you can take to protect your body and your bones from these complications:
- Work closely with your doctor. Part of your doctor’s strategy for helping you fight Crohn’s disease should be preventing bone loss. If your doctor doesn’t bring up concerns related to your bones, be sure to ask about it.
- Try bone-boosting strategies. Steps you can take on your own to help preserve bone density include getting regular exercise and eating a diet rich in calcium (think milk and dark green vegetables) and vitamin D (fortified milk and fatty fish). You can also get an adequate dose of vitamin D through a few minutes of sun exposure each day. Finally, avoid smoking and excessive drinking in order to preserve your bone health.
- Consider supplements. In some cases, you may need to take calcium and vitamin D supplements to avoid bone loss. Ask your doctor to help you work out the proper dosage of each supplement.
- Manage steroids. Because steroids can lead to bone loss, changing your Crohn’s disease medication might be a strategy. Discuss possible options with your doctor, including going off steroids entirely, taking medications with a smaller steroid component, or taking drugs that support bone health along with the steroid treatments.
- Get additional screenings. Because of the risks related to bone loss, Dr. Carvalho says it’s reasonable to monitor your bone density more often than suggested in guidelines for the general population. In addition, children with Crohn’s disease should have their growth measured at regular intervals to make sure there aren’t any delays related to bone density problems.
Bone health is yet another aspect of Crohn’s disease that needs to be managed, but all of these steps will benefit your overall health at the same time.
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!!! 🙂
Crohnie Man 
