I Have A Dream

Jan20

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”

Happy New Year – A look into 2014

Jan16

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.

What’s Your Trigger

Oct1

Lately I have been thinking about how lucky I am in the food categories, compared to many others with IBD. I see people on TPN or liquid diets and think, “Well, at least I can eat solid food”. Even though I have some restrictions, every day I feel like I am lucky to be in the position I am in.

But today, I really thought about it and I have started to question, “Am I really lucky”. After my major flare, eggs which were a safe food for me became an enemy. So did bananas. I also realized that gluten products were not helping me to get well. I went gluten-free and cut out eggs. But, cravings would hit. I found the egg issue was a big one. After talking to others with digestive issues, I found out about Papaya Enzymes. I started taking them every time I ate eggs and they really helped. I would get no pain, wouldn’t have to rush to the bathroom 10 times a day and my outlook on food changed.

But now, there is a shift in my life. I take 5 enzyme pills when I eat eggs (bottle recommends 2-3). They used to help but now lately I have been getting some pains when I eat eggs. I know that means my body is adjusting to the pills and the efficiency of them is diminishing. Along with eggs, salad has now also become an issue. I used to be fine with any leafy vegetable. But now within less than an hour it runs its course and comes out almost as fast as it goes in. Slowly, my dietary choices are getting slim. I am back to trying to lose weight so I have to watch what I eat and my choices are shrinking.

So I was sitting here this morning, eating scrambled eggs and thinking, am I still lucky. As many of you know, I love food. I enjoy the flavors and smells. I love the entire experience surrounding food. I don’t feel I can survive on a very strict diet but that is where I am heading. Things I onced love to indulge in I can no longer eat. It has been almost 2 years since I had a slice of NY pizza or a bagel, chinese dumplings or pastries. So many foods that I took for granted I might never eat again. And that scares me. I am trying not to feel depressed over this but it is hard. I went to school originally to be a chef and I work in the hospitality industry. I buy food every day for work. It is my life. To look at a bounty of great looking food and know that I can’t touch it really saddens me.

Some of you might think this is self pity, and part of it is. I know there are others worse off than me. But most people don’t realize just what food means to me. It isn’t just a nutritional, life sustaining thing. It is a way of life and is a part of mine. I feel like today, a part of me has died.

So where does this leave me know. I am still struggling with my weight and trying to eat healthier. I am trying to diet. But this latest development hurt things. But I can’t give in and I won’t. I am done with excuses. I will find a way to get to my goal and overcome my obstacle. Hopefully, my passion for food will rise like the phoenix and renew itself. There are so many new foods out there to try. It might be time to explore options and see just what my diseased body can handle.

And worst case…as I am sure a friend of mine might suggest…there are always gummy bears to live off of. But that, is another story.

“I No Longer Have Crohn’s, This So-Called Incurable Disease”

Jul22

Now that I got your attention…no I did not cure my Crohn’s. This is a quote from a writer/blogger that claims she cured her Crohn’s from practicing Buddhism.

As you can guess, I am about to go on a rant because this infuriates me. I have said it before, and will say it again. IBD is incurable. My last post was a repost from a friend who explains how even by removing the disease portion of your intestines with UC you are not cured. It helped open my eyes because I was one of those that used to say that if you remove UC, then you are cured. I know I was wrong in that thinking now. Now, we have this person that says if you just think your disease away you can cure yourself.

Before I go any further, please go read the article, which was put out by a news agency. https://open.abc.net.au/posts/my-freedom-from-bowel-disease-75ut3na

That’s right…a news agency. The same people who should be reporting facts are now reporting opinions.

Now, I don’t want to dismiss the whole mind/body connection. I do believe in it. For years I felt I controlled my disease by my thoughts. But I only controlled it. I would never say I cured myself, even though I had no symptoms and was off all meds. I was in remission. It is possible to use your mind to help control the body. I think her becoming a Buddhist helped her to clear and focus her mind. Meditation is good for the body. I won’t argue any of that. Also, I won’t argue that stress plays a big factor in our disease and by removing it you get better. Removing stress from the body at any time will help it heal against any disease.

“What became abundantly clear to me was that how we ‘think’ creates chemical reactions in the body. This in turn affects and can damage the cells within us. With no stress, the immune system works extremely well. By practicing acceptance, which prevents all stress, I got through breast cancer, skin cancer, and both my brothers dying of cancer. With each of these tests, the so-called incurable Crohn’s disease never returned.”

This was probably one of the few things I was able to agree with in the article. I am happy that this author was able to tackle Cancer and still remain in remission. I think it would take a very focused mind and it seems like she has one. I applaud her for that.

The one quote that worries me though was this.. “In my understanding I no longer have Crohn’s, this so-called incurable disease. Some doctors still find this hard to believe and often just say to me “So you are managing your Crohn’s disease well!” I manage nothing but my mind.” It worries me because she isn’t managing her Crohn’s. She is treating this like she is cured, and even the doctors don’t say she is. I think when she gets a flare she is going to spiral downwards real quick and probably suffer from some bad depression.

I sort of hope that Kit Campbell reads this and comes to the realization that she isn’t cured. I hope that she eventually sees what we all see, and that she needs to be treated. But I know reality and the truth is my job as an activists just got harder because of people like her telling stories that are best kept for the campfires.

Can Ulcerative Colitis Be Cured?

Jul16

A friend of mine, Marisa, wrote this on her blog. I have to say that used to think that removal of the disease was a cure for UC. My eyes have been opened though and I now know the truth. I can even come close to explaining it as well as Marisa does.

Can Ulcerative Colitis Be Cured?.

Get Your Guts in Gear 2013

Jun10

On June 7-9 I attended my first Get Your Guts in Gear ride. For anyone that doesn’t know who they are, Get Your Guts in Gear or GYGIG is a non-profit organization that raises money for IBD through bike rides. This years ride was the 10th anniversary of the New York ride.

When I first heard about the ride I thought this was something that was part of CCFA and I didn’t realize it was a separate organization. I also wasn’t to interested because I haven’t rode a bike in many many years so I knew there was no way I would be able to do a 200 mile ride. Then a friend and co-IBDer told me I can crew. The crew are the people who support the riders in a number of different ways from making sure the road is clear of debris to manning a rest stop to just cheering them on to raise their spirits. This sounded more like my style so after some thinking, I signed up.

As time went on, Marisa, the friend that told me to crew, kept telling me how much fun I would have and how it would change my life. I knew it had changed a lot for her and I didn’t know what it would hold for me. I would soon find out.

When I arrived at the site for the shuttle bus, I was the first one there. Like most things, I was the first one and I was alone. Eventually others would arrive and the first ones to come were friends that I have spoken to online and have followed in blogs, but never met. It was like a book coming to life. People I have only read about I was now meeting.

That first night was a rough one. A tropical storm was drenching us and there was no escaping the rain. One of my jobs was to help load the equipment truck so I was soaked by the end of the night. I would be the last to come back to our bunk. I would see everyone in one area chatting and getting to know one another. I was alone. wet and cold. But I was welcomed with open arms and right away I felt like part of a family.

For many of us, this was our first time with GYGIG and even the first time meeting each other. Yet when we all tried to go to bed and someone’s snoring kept us all awake, we truly were like a family as we all yelled at the snorer (who will remain nameless). What we found from this was within hours, we truly were a family.

The next two days would be rough for me. My job assignment was Camp. This entailed making sure the equipment truck was loaded and unloaded, the campsites were cleaned and nothing got left behind when we left, setting up the camp for everyone’s arrival, making sure snacks and drinks were provided, keeping morale up…ok I am getting tired again just thinking about it all. I have had problems with sleep and I seem to always be tired. My back has been hurting on and off from my degenerative disks. Overall I am a mess but this weekend, all of that went away and it was like I was 18 again. I had so much energy. I think I got it because even though it was hard work, I enjoyed doing it.

The best part of the weekend though were the people who I met. Some I had met before. Others I had spoken to online but met the first time here. Many others I was meeting for the first time ever. Not everyone on this ride had IBD but were somehow connected to it. At night, the group I hung out with would share stories about our lives and IBD. This was the first time I was with a large group of IBDers and they were all being so open with their disease. I loved it.

At the end of the weekend, I snapped a photo. It would be one of my last memories for the weekend. It was a breathtaking view of the mountain and water. It described my weekend perfectly. Wet, some ups, some downs but overall breathtaking. Some of my Camp crew dropped me off to get my bag before I left. I started this journey alone.. I left being part of a family. When I first signed up for GYGIG I only planned on doing it the one time. Now, I can’t see my life without it. It is an experience that I never want to forget and hopefully can relive it every year.

Take Steps 2013

Jun3

Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA. Better yet, I volunteered. Last year I was wiped out from walking so I decided this year I would help out instead. Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore. But it was soooo worth it.

One thing I like about the walk is the location. I was helping out at the Liberty State Park walk and the views from there are breathtaking.

After I take this in I head over to my assigned area, the food tent. This year I decided to put my talents to use. I helped get donated food for the walk. I was able to get some coconut water, vitamin water, Smartwater, fruit and chips.

After we got set up, I decided to look around before it got real busy. There were tents for some drug reps (Humira, Remicade), Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ. All was quiet before the storm.

As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off. The wind was pretty powerful though. With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk. When they came back that was when the real fun began. Our tent got mobbed. Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water. Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here. I was talking with one of the volunteers and he asked why I was there. I mentioned I had Crohns. He said his son has Crohns and that was it. No further discussion. It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still. My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up. I can understand that.

This up coming weekend is Get Your Guts in Gear. I know a lot of the volunteers that will be there. I know we will be talking about it a lot more but we will also have fun and talk about other things. 2 weeks and 2 awareness events. It is enough to tire these old bones. After the walk, I feel achy. Hate to see what next week brings. Stay tuned for a recap.

Recipe for Success – Repost

May28

I was looking over past post’s and I saw this one from August 2012 and thought I had to repost it. I also thought that since I have lost some of my way in life, that rereading this would maybe help me get back on track.

“Two weeks ago at my Weight Watchers meeting we were talking about recipes. We were encouraged to bring in a recipe to swap with everyone. When it was my leaders turn, she gave us a recipe…but not for food. I looked it over and thought, this isn’t just relevent to food…this is good for life. So, I decided to share the wisdom of my leader and give you…The Recipe for Success

Ingredients:

1 Cup of Vision 1 Cup Commitment 1 Cup Discipline 1 Cup Self-Control 1 Cup Sacrifice 1 Cup Conviction 1 Cup Imagination

Directions:

In a large part of your life, add 1 cup of vision. Make up your mind which direction to go and strive for it everyday. Add 1 cup commitment. Commit yourself every day to reaching your goal. Add 1 cup discipline. Discipline yourself to do what you must to keep the committment and hold on to the vision. Add 1 cup of self-control. No matter what temptation comes, remember you have a choice. Add 1 cup of sacrifice. Be willing to give up bad habits for good habits. Add 1 cup conviction.

Have the courage to stand your ground knowing that you are mixing the right ingredients together in your life. Add 1 cup of imagination. Imagine what all this cooking will achieve in the end. Bring all of these things to a boil. Now pour it all into the rest of your life and you have the recipe for success. Keep it always on simmer.

As I read this in the meeting, I was no longer thinking about food. I know she gave this to us to help us stay on course and keep up with our weight loss. But I saw a bigger picture. Living with a chronic illness will do that to you. I didn’t just see food…I saw a recipe to beat an illness. I saw a recipe for me to get through life.

I know at times life with Crohn’s or Colitis can be hard. Sometimes we want to just throw in the towel and say I quit. But that is when we need this recipe. Sometimes, we need to alter a recipe and add a little more spice to it. There are days we might need 2 cups of self-control. Maybe we need a gallon of vision because all we see is our blanket covering our eyes. Whatever the day…keep this recipe close at hand. Make it your first meal. Make it your last. Make a big batch of it on the weekend for the whole week. Whatever you do…make sure to make it at least once a week.”

World IBD Day 2013

May18

HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness. This year I was inspired by CCFA’s poor attempt at marketing IBD. As you know from previous posts that I was not for their Escape The Stall campaign. I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us. I hope you enjoy it.

IBD and Relationships (Repost)

May15

In the spirit of World IBD Month and my busy schedule, I have been reposting my old posts. Today, I will be reposting my post about relationships. Keep in mind that I am a guy so this is from a man’s view. I know women have their own thoughts which may vary.

I have seen a lot of questions and discussions about this topic. Crohn’s Disease is such a private and sometimes gross disease. Many people ask “When in a relationship should I tell my partner that I have Crohn’s?” On top of this, I hear “How do I tell my partner I don’t feel sexy/want to have sex?” For women, in my opinion, this is easier to deal with than men.

First let’s tackle the first question. A lot of people feel ashamed about having IBD. Whether it is Colitis or Crohn’s, a lot of people don’t want to talk about it for feel that people will look at them differently. When it comes to dating, this is a real big issue. I know women don’t want a guy to know because they don’t want to disgust them or turn them off. When you first start dating, for a woman, they want to feel and look sexy. But what about a guy’s view? What does it say to a women when a guy has to go to the bathroom 5 times during a date. The first thought might be, “He’s doing drugs”. Another thought is, “Maybe he doesn’t like me and is calling another woman”. Truth is guys have the same thoughts and feelings as women. We want to look good also. We want to feel strong in a woman’s presence. Most guys want to be able to take control and treat a woman right. We can’t do that if we are in pain or running to the bathroom. We can’t do it if we are constantly feeling sick.

So I say, as far as telling that new person, tell them right away. It is a lot to deal with, but a lot of times IBD will run our love life so let them get used to it. I wouldn’t tell them when I first meet the person, but talk to them on the first date. Let them know that if you have to run to the bathroom..it isn’t their fault. Let the other person know you want to be there to talk to them but you have to leave for a brief moment. If you’re a guy and your want to look strong, then telling the truth is being strong. Opening up to a woman is being strong. Honesty is the best policy. It will help strengthen the relationship.

Now, if the other person gets scared at this and runs..well then it really wasn’t meant to be. You should know if the other person can handle your disease right away. Now I don’t think you have to tell your whole life story with the disease on the first date. Just let your partner know what they can expect. You can go into details another time.

Now, later on in the relationship (or marriage) IBD and sex will come up. There will be times you won’t want to have sex because of the symptoms. Again…be open and honest. If you’re having sex, then you should be in a place in the relationship where your partner knows your disease and can understand it a little. Let your partner know it isn’t their fault that you don’t want to have sex. For a guy this is rough since we are made to look like sex addicts…like we want sex 24/7/365. Truth is, there are plenty of times we don’t want to have sex. There are times our arse hurts and is sore. We might be sick to our stomach. We might have joint pains. None of this is going to make us want sex. And these symptoms can last for days and weeks. That is why I say be open and honest with your partner. If you aren’t having sex for weeks, and you don’t talk about, your partner may wonder what is wrong. They may feel like you aren’t attracted to them anymore or worse…is having an affair. Let your know partner know it isn’t them.

So, overall..be open and honest. Don’t be ashamed of your disease. You are going to have it the rest of your life. Let your partner into your life and let them know that they are in the relationship with both you and your disease. I have found that overall, if the person can’t handle it…they aren’t worth being with anyways.