January « 2014 « A Guy With Crohn's

Today, January 20th, it is Martin Luther King Jr Day in the USA. For anyone that doesn’t know who he is, MLK was an American pastor, activist, humanitarian, and leader in the Civil Rights Movement. One speech he is well-known for is his “I Have A Dream” speech. Part of his speech was, “I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident, that all men are created equal.” Also, “With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.”

Now of course, MLK was talking about racism and how one day everyone will be judged as equal and not be looked at for the color of their skin. This speech was given on August 28th, 1963. Times were definitely different back then. Looking at our times now, a lot has changed. To start, we have a black president of the USA. Segregation is illegal. In most places, you aren’t judged by the color of your skin.

But, when you do look closely at the times, some things haven’t changed. Back in 1963 the president was John F Kennedy. As many people now know, he suffered from many illnesses, which back then were kept secret. One of those illnesses that he is thought to have had was IBD. Not much was known about it then and there weren’t a lot of treatment options.

Fast forward 50 years and a lot more is known about IBD. We have many treatment options to us, both medicinally and surgical. However none of these treatment options are cures. Anyone with IBD has it for life. Sadly, a lot of us won’t even be able to experience some of these treatments because once again we have inequality.

Instead of race being an issue, this time it is wealth. Crohn’s Disease and Ulcerative Colitis can occur within anyone. It is said that about 1.4 million Americans suffer from IBD. The disease doesn’t care if you are white, black, asian, or hispanic. However, where the inequality comes in, is in the treatments. Many of the drugs are expensive. If you don’t have the money, you can’t have the drugs. There are some exceptions and the drug companies do help some people. Sadly though, there are many people out there suffering every day because they aren’t being treated. They are ignored because they don’t have health insurance. They are out of work and don’t have the thousands of dollars needed for a month’s supply of medicine. These people are pushed aside and told that they can’t have something because of their status in life.

MLK had a dream. His dream was that African-Americans would be treated as equals. For the most part, his dream has come true. Now, I have a dream. I have a dream where one day people will be allowed to be given medicine regardless of the amount of money they have. I have a dream where one day people will be treated for their illnesses because they are sick and not because they can pay a bill. I have a dream that one day IBD will be looked at as life ending diseases and a cure will be researched and found. I look forward to when IBD will be given the respect it is deserved. And I will end this with the final words of MLK’s speech:

“And when this happens, and when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God’s children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

Free at last! Free at last!

Thank God Almighty, we are free at last”

Wow, it has been awhile since I posted anything. I am sorry for that everyone. Life has been real busy, especially at work. A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org). I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out. I will say it has to do with supporting others with IBD and I can not wait to get started. I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/). Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season? Did you have fun and do anything special? I know a lot of people I talk to online spent it in the hospital. Myself, I spent it on a cruise down south. My wife and I took a Christmas cruise to Florida and the Bahamas. It was reflecting on the cruise that got me to write this blog. I was wondering how many of you with IBD find it hard to travel and go somewhere?

This was my first cruise where I am gluten free. We had done some research and had read that there would be plenty of options for food for me. I really didn’t worry about it. I should have. My first clue was when we first got on the ship and went to lunch. The only thing listed as gluten free was the mashed potatoes. Good thing I know what normally has gluten in it so I was able to play it safe. This theme of lack of gluten free items would carry on throughout the cruise. Most of the desserts were not gluten free. I started to get annoyed because the reality is that it isn’t hard to do. They did have GF bread and it was ok. My dinners were altered to be GF and I was happy for that. But for desserts, they could have made a flourless chocolate cake. I am sure many people would eat it.

Overall, I had fun on the cruise. We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas. I was lucky and had no major issues with my Crohn’s. I was able to go out and have some fun. I even was able to indulge in a little alcohol…ok…it was more then a little. I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling. Do you pack extra clothes? Do you take certain meds to calm the guts? I remember take Lamodal on one cruise about 3 years ago. I helped me enjoy myself and gave me a life off of the toilet. Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year. I think this is going to be a great year. I myself am working on so many IBD related things. Besides IIF and TCJF I will be working with GYGIG again in June. I might do the CCFA Takes Steps this year. So much to look forward to this year. I hope to post more often and will let everyone know about everything that is going on. I do want to say that if you live in the NYC tri state area, we have some good things for you this year. But that is another post for another time.