My “Ask Me” Shirt!

Last time I wore my “Ask Me” shirt a person I see all the time questioned me.

Person – Josh why do you talk so much about the disease you have and you know it is really gross?

Me – When I was diagnosed I had never heard of it, I thought I could be fixed, wrong. Yes it is gross sometimes, but it is more about pain, joint pain, eye pain, extreme gut pain, pain that never lets up. It’s about these medicines I take to stay alive, some with devastating side effects = more pain.

Person – Why do you joke and carry on and when others poke fun at you, you laugh?

Me – If I weren’t joking and cutting up, I would be crying, which by the way I do a lot of. I don’t just cry about me, I see horror stories going through my FB and Twitter news feeds. Most on-line see once or twice a year something terrible in their feeds, I see it everyday and sometimes several times a day. It’s most of the time not people dying but someone going through hell, things “NORMAL” people can’t comprehend.
I laugh at people’s poking fun, because most of the time it is them trying to make me feel better. I get offended sometimes if I don’t know them well because they don’t know there is a line to not cross, but I still laugh anyway. At some point down the road when I know them better I tell them about that line, but by then they usually know.

Person – How do you do this?

Me – I have no choice. This is “MY” life, the only one I get, and I make the best of it, I try everyday to live to the fullest. Chronic illness is hard, very hard and I have three of them. So you may have to make exception for me sometimes, but never feel sorry for me, never.

Person – Wow! Thanks!!!

Me – Wow, thanks for reading my shirt, asking and listening.

A Guest Post

A Guest Post From, Maureen Green, How your mental state feels!!!

When I was first diagnosed I felt a sense of urgency to get better and find a treatment that worked so I could get back to work and provide for my 3 kids, as a single mom. When I realized that I wouldn’t get to that point quickly and lost my 50k a year job, I felt a sense of worthlessness, despair, being alone in a sea of something I knew nothing about. I felt like a failure, even though it wasn’t my fault. I felt at fault in some way. I felt guilty about not being prepared and putting my kids in the situation we were in now. I went through deep, deep depression. I went through agonizing loneliness and guilt, I felt like I was trapped in something I didn’t know how to get out of. I felt like I was never going to get better and to suck it up and deal with it. I withdrew into my illness, my kids lives (what I had the energy for) and into my own shell. I didn’t want to be around people and I didn’t want to even try to be in society. I was a nothing, I even felt like a failure as a mom. Crohns Disease affecting the affected person menatally,,,,,,nah!!!!! lol, sometimes I just wanted to die because I felt my kids would have a much better life without a sick mom. That’s how it affected me mentally. Thanks Josh Robinson for this opportunity, I haven’t thought about this in a long time. I really have come a long way since January 2008 when I first got sick and Feb 2008 when I was diagnosed with Crohns Disease, found out I had C-diff and lost my job all on the same day. That was the most marvelous day of my life, lol. heart emoticon you and hope we can get you to where I am one day!!!!!! Be well friend!!!!-#nursemoknows #take steps

Joshua E. Robinson

joshuaerobinson@comcast.net

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

Inflammatory Bowel Disease Awareness Post;

Inflammatory Bowel Disease Awareness Post;
I’ll use me as the example. Today June 6, 2015. Up for work at 5:30am, going down my front steps at 5:55 had an accident and crapped myself. Back in house, cleaned up re-dressed, called work to inform what happened, made it there by 7:05. About 1:00pm I got nausea so bad I would not have been surprised to had seen my toe nails come out of my mouth. I got the nausea under control with Phenergan, a Xanax and lots of Peppermint Altoids. We have a low pressure weather system going through so my joint pain makes me feel like I have been ran over. This is a very typical day of what it feels like to have Inflammatory Bowel Disease. There are millions of us that live this day I described daily.

Joshua E. Robinson

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

As Healthy As I Will Ever Be

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

via As Healthy As I Will Ever Be.

Depression

People diagnosed with chronic illness, depression can be a common complication. The life altering event of chronic illness which cause us to face a much different “new normal” can be devastating due to uncertainty and rapidly changing circumstance. I can be all consuming worrying that ones life can completely flip in a matter on moments, I know it has happened to me several times. A year ago I went to work and was okay, ended my day in hospital being told things could go very bad for me very quickly because of Sepsis. Sepsis if caught soon is terrible but fixable, if caught late you are prone to septic shock, which your vital organs shut down one by one, a very horrible last hours eventually going into a coma then death. I think this is very much enough on a mind to cause depression and PTSD. I know many with Inflammatory Bowel Disease, Lupus, MS, Fibromyalgia, ankylosing spondylitis and more, these people a scared out of their minds most of the time, their new since of normal is something the average person cannot imagine. Are people diagnosed with chronic illness scared, yep, do they have PTSD, many do yes, are they depressed, yes 100%. When you the normal, meet someone with a new normal, don’t judge, until you know what you are talking about, don’t suggest, until you are educated, know that this person is very confused and very scared, they do not understand why this has happened to them, a very viable person reduced to sickness and much pain. Am I depressed, you bet, Am I scared, every minute and there are many like me, so be kind..

Joshua E. Robinson

joshuaerobinson

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

Thursday March 27, 2014

Thursday March 27, 2014, one year ago today.

My son Steve and daughter Kaitlyn had come over to hospital to see me, when Doc popped inmy room. Doctor Ciarolla looked at me and said, “ What the hell, I scoped you less than a month ago, things were looking good.” I told him I know. Doc then proceeded to ask if I understood that I would likely need a bowel resection and would come out of surgery with a temporary ostomy if not a permanent one. Doctor Frank came in, he and Doc explained the procedure that would be done. Doctor Franks left the room. Doc C then looked at very hard and ask “Do you understand how serious this is?” I said yes. He said, “No really do you understand how serious this is?” I started to cry, which make Steve and Kaity upset, I told Doc yes again and added I could go sepsis and die. He said yes you could I told him please don’t let that happen. He looked at me again and said “deal”.

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About an hour went by and Doc C was back, to tell me they were going to try something else. I was put on complete bowel rest since my perforations were micro, to give the a chance to heal on their own avoiding surgery. The only thing I got by mouth was blood pressure meds. I received flagyl and ciproflaxn in major doses IV form to hopefully keep me from going full blown sepsis, I also received Dilaudid every two hours for the first couple days, after that every four hours. I was still scared, but relieved, and one year later I am still here and it worked. I have not eaten a strawberry since and never will again.

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!!! 🙂

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

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!!! 🙂

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!!! 🙂