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…

Something that needs to happen now, 30 days is all we

Something that needs to happen now, 30 days is all we have to get 100,000 signatures…

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

More than 1.6 million Americans live everyday with Crohn’s disease, ulcerative colitis, and indeterminate colitis, three chronic, incurable, and debilitating inflammatory bowel diseases (IBD) that cause crippling abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss, among other symptoms. IBD often prevents patients from working or attending school. Frequently, they end up hospitalized with life-threatening complications.

Every year, the Social Security Administration holds hearings to add illnesses to its Compassionate Allowance List (CAL). We urge the White House to require the SSA to convene a hearing to add IBD to this list in order to expedite the approval of benefits for patients living with these chronic, incurable, and debilitating digestive diseases.

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!!! 🙂