26 March, 2014 22:39

Today, March 26, 2014 exactly one year ago, One year ago today I was feeling really bad, had a low grade fever, but went to work because I knew it was “just” a Crohn’s flare, I use “just” a very lightly because to someone without the disease would think they were dying. About 11:00am I needed the loo, sitting in there I got a pain so sever in my crotch and lower left abdomen that I fell off the toilet. After a few minutes laying there I managed to get up and clean everything up, I went out and told my friend and co-worker I was sick and needed to go to the back room to lay down for a few. After a bit the pain let up a bit so I returned to work. I could not stand completely straight up, but that’s okay and I finished the day at Central. Upon arriving home I passed through the living room and made my way upstairs to get ready for Anthony’s game. Going back to the living room I told Eva I was ready to go to Philippi and she said (”Why are you hunched over?”) I told her it feels like someone punched me in the gut and kicked me in the crotch, we argued a bit but she convinced me I needed to stay home. Off they went. I sat down in the recliner and fell asleep. About 7:30pm I woke up needing to pee, immediately upon standing I collapsed in the worse pain I have ever felt, I knew something was terribly wrong. My phone was upstairs, I had to crawl on all four to get it. I called my Mom who sent my son, Stevie he took me to Grafton City Hospital’s ER.

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The doctor on call immediately ordered blood work, My blood pressure was tanking where he found my white blood cell count was through the roof, so he ordered x-rays and a CT scan. A nurse comes to me and is hooking up an IV as soon as she was done the Doctor told her to give me Demerol, a few minutes passed, the nurse still with m when the Doctor came back in and told her I had “Free Air”, yes that scared the hell out of me because I knew what it meant. The contents of my intestines were emptying into my abdominal cavity. I spoke up and said I wanted to go to Fairmont General, where Doc C worked and he would do everything in his power to keep me from getting Sepsis. My day ended with a ride in ambulance, more Demerol, lots of Morphine and at FGH lots of Dilaudid. March 25, 2014 I laid in a bed in hospital terrified, because I ate a strawberry.

Joshua E. Robinson

joshuaerobinson

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

Inflammatory Bowel Disease and our eyes

Inflammatory Bowel Disease and our eyes, who would think that I.B.D. would mess with your eyes,I know, right? Crohn’s disease and ulcerative colitis can cause eye problems because of theinflammatory nature of the disease as well the medications can cause problems as well. For example, long-term use of corticosteroids may lead to glaucoma and cataracts (clouding of the lens of the eye that impairs vision). Last year at the time my Optometrist said I have the beginnings cataracts, yay.

The disease it’s self can cause chronic dry eye. Keratopthy, a disease of the cornea that doesn’t hurt, your eye Doc may see white deposits on the edge of the cornea. Episleritis or Scleritis, episleritis can cause tenderness and mild discomfort, it does not impair your vision. Scleritis can cause severe eye pain and impair your vision. Scleritis requires aggressive treatment. Uveitis, a painful inflammation that causes blurred vision and light sensitivity, it can set on suddenly. Iritis is a inflammation and is very painful. Iritis affects the only part of the uvea that controls the amount of light coming into the iris, you can absolutely be blinded by car headlights, sometimes flashing sunlight can blind you in the middle of the day. Iritis requires aggressive treatment.  Uveitis and Iritis left untreated can cause scar tissue resulting in glaucoma and vision loss.

This little post is in hope that if you notice your vision changing, you seek help. People with Crohn’s disease or ulcerative colitis should get their eyes checked every 6 to 8 months and should push their optometrist to look for these conditions. Please take care of your eyes and please take care of you, you are important to me.

Joshua E. Robinson

joshuaerobinson

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

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.

http://online.ccfa.org/site/TR/Ironman/AllChapters?px=3156067&pg=personal&fr_id=5080#.VKCMwR3RydM.facebook

5 People You Meet When You Have A Chronic Illness

Very Good

Planning Everything

Everyday normal folks do not understand this, how lucky they are. Lucky that they don’t know, lucky they have an abundance of energy, which is something people with a chronic illness do not have. People with chronic illness energy levels are low even after sleeping all night and the reason is because there illness causes their immune system to continue in hyper drive even when sleeping.

Everyday normal folks don’t understand how lucky they are that they have to do every single thing pre planned and sometimes thought about days in advance. For instance a trip to go on vacation, I begin weeks in advance mapping our route so I know where every single restroom is. Also about two day before leaving to get there or leaving to come home I pretty much reduce my diet to nearly nothing. Which again normal folk don’t know what it is like to choose the pain of hunger over the severe pain of eating while being in a flare up with inflammatory bowel disease.

I love coaching youth sports, something that would be no problem to a normal person, they are lucky. Something that is a simple as spending a few hours a week doing something you love can leave a person that is chronically ill utterly exhausted, planning is a must. Planning how to save enough energy to do the event, and planning enough time after to recover. My wife whom totally has stood beside me gets pretty angry at me most weekends because much of them are spent sleeping to recover from my work week.

Everyday normal folks do not understand this, how lucky they are. Lucky they don’t know the planning of multiple Doctor visits per month, planning for blood monthly blood work, planning iron infusions or B-12 injections, planning for self injections of very scary medications, or the weekly hour filling a pill box. Every second of persons like who is a “Chronic Baby” is planned, this is don’t so we can be lucky and continue our not so normal, our new normal chronically ill life, why, because we have no choice.

WE DID NOT WAKE UP THIS MORNING WANTING TO HAVE A DISEASE, BUT WE DID.

We plan and we fight for every second of health we get and to quote

“You never know how strong you can be, until STRONG is the only choice you have”!

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

Strong

Strong, a friend mentioned they are tired of being strong, well me too… Being strong is something all people strive to be, we push our kids to be strong in their activities, sports, music, dance, and it’s all we can do. But do you understand really what strong means? Do you? Strong can mean how fast you run, how much you can lift, how many flips you do, how far you swim, how many home runs, and who you beat. I want to say Strong is how you live your life. I claim myself and thousands of friends to be strong, my friends I am talking about are people, people with issues, issues most cannot comprehend… I have Crohn’s Disease, Inflammatory Bowel Disease, (there are two, the other being ulcerative colitis), but I have Warriors with cancer, P.O.Ts, AS, MS, RA, Lupus, celiac disease, and mental illness. I / WE get very tired of being strong it gets very hard and sometime the pain of strong is hard… We do what is needed and learn how to help, we are strong… But not by our choice because, Strong Is The Only Choice We Get!!!

Joshua E. Robinson

joshuaerobinson

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

Urge the Social Security Administration to Add Crohn’s Disease & Ulcerative Colitis to its Compassionate Allowance L ist

Urge the Social Security Administration to Add Crohn’s Disease & Ulcerative Colitis to its Compassionate Allowance List

Many of us with Crohn’s disease and ulcerative colitis want to work, I do, to provide for ourselves and loved ones, but are unable to due to our debilitating illnesses. This petition is to help those of us suffering and unable to work to obtain social security income which right now, is an extremely long and often difficult process. Please sign the petition and share it on your page and then share it again. I realize my “normal” friends feel like I/we are beating them over the head with this but to 1.6 million Americans this is very, very urgent. Please as I said sign the petition and share it on your page and then share it again. Do this everywhere you can… Share, Share, Share…

https://petitions.whitehouse.gov/petition/urge-social-security-administration-add-crohn’s-disease-ulcerative-colitis-its-compassionate/hKmNg13f

Joshua E. Robinson

joshuaerobinson

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

Urge the Social Security Administration to Add Crohn’s Disease & Ulcerative Colitis to its Compassionate Allowance L ist

Urge the Social Security Administration to Add Crohn’s Disease & Ulcerative Colitis to its Compassionate Allowance List

Many of us with Crohn’s disease and ulcerative colitis want to work, I do, to provide for ourselves and loved ones, but are unable to due to our debilitating illnesses. This petition is to help those of us suffering and unable to work to obtain social security income which right now, is an extremely long and often difficult process. Please sign the petition and share it on your page and then share it again. I realize my “normal” friends feel like I/we are beating them over the head with this but to 1.6 million Americans this is very, very urgent. Please as I said sign the petition and share it on your page and then share it again. Do this everywhere you can… Share, Share, Share…

https://petitions.whitehouse.gov/petition/urge-social-security-administration-add-crohn’s-disease-ulcerative-colitis-its-compassionate/hKmNg13f

Joshua E. Robinson

joshuaerobinson

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

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,700 times in 2014. If it were a cable car, it would take about 28 trips to carry that many people.

Click here to see the complete report.

Urge the Social Security Administration to Add Crohn’s Disease & Ulcerative Colitis to its Compassionate Allowance List

https://petitions.whitehouse.gov/petition/urge-social-security-administration-add-crohn’s-disease-ulcerative-colitis-its-compassionate/hKmNg13f

Many of us with Crohn’s disease and ulcerative colitis want to work, I do, to provide for ourselves and loved ones, but are unable to due to our debilitating illnesses. This petition is to help those of us suffering and unable to work to obtain social security income which right now, is an extremely long and often difficult process. Please sign the petition and share it on your page and then share it again. I realize my “normal” friends feel like I/we are beating them over the head with this but to 1.6 million Americans this is very, very urgent. Please as I said sign the petition and share it on your page and then share it again. Do this everywhere you can…