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.

It’s Survey Time

May30

So as some of you know I am a fan of WEGO Health and what they have to offer the medical community. Well, starting today they are holding a survey on the online Crohn’s and Ulcerative Colitis communities. They have asked me to share the survey to make sure that they get as many patients and caregivers involved as possible. The survey will take about 10 minutes. Please take the time and come here to take it..

https://www.surveymonkey.com/s/G8S8FTY.

As a thank you for the survey, WEGO Health will be making a donation to a charity of my choice.

Thank you for helping out.

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.

Crohn’s Disease and Depression (Repost)

May13

Since this is Mental Health Awareness Month I thought I would repost my thoughts on depression. This was one of my first post I wrote when I was still using Tumblr. I then reposted it here last year so in a sense, this is the 3rd time, but for many of you this might be the first time you see it. I just want to add that I always say with IBD you are never alone…and that really goes with depression also. If you are feeling depressed, please talk it out with someone.

It is coming up on the year mark on when I started to embrace that I have Crohn’s Disease and with it comes depression. Depression is a big part of the disease and not something that is regularly talked about. I never had a doctor tell me that this would be one of the side effects of Crohn’s. It was something I have had to find out for myself and learn to deal with on my own.

Everyone diagnosed with either Crohn’s Disease or Colitis will go through some sort of depression at least once in their life time. Anyone with the disease will probably back me up on this and can easily recall their first time experiencing it. For most of us, it is when the doctor comes into the room and informs us of his diagnosis. If anyone is like me, our first reaction is …”What? What the H*LL is Crohn’s Disease (or Ulcerative Colitis)”. After we are given the breakdown of what it is and find out it is incurable, that is when that sad feeling usually will hit. Then we are told how we will be on meds all our lives and if it goes like when I got diagnosed, you will be told that you will have at least one surgery within our lifetime due to the disease. That rumbling cloud that was closing in, is now over your head and pouring. Depression will now sink in.

Now I am not saying that you will experience a curl up into a ball, never talk to anyone again, I just want to die depression. It could just be a “Why me?” experience that last a couple of minutes. But, it is there and truthfully, it will never really go away.

I was never one to open up to anyone with my feelings. I have always kept them inside and dealt with things as they came. As a kid with CD, I went to a shrink per my doctors orders and I still couldn’t open up. I felt, no one feels the way I do, so why bitch about it. Certainly a shrink won’t understand what I am going through..so no way will I open up to him. I was 15 at the time and didn’t know better.

When I was in college, my first real bout of depression set in. I went to school in Upstate New York in the Adirondack mountains. I remember sitting in my suite, looking out the window at the snow-capped mountains in the distance. It was such a beautiful sight and I felt so alone. I felt like there was this gloom hanging over me. Here I was in the prime of my life, having fun and I felt so depressed. Eventually it would pass and I didn’t dwell on it. I did take notice on how I felt and vowed that if it came on again I would get help. Of course I would ignore myself.

Over the years, depression would come and go. Last year I would experience not one but two bouts of it and it would change my life. A day after my birthday in May 2011, my father in law, who had Colitis passed away. He had been having problems (from what I was told) brought on from his ostomy bag. I would learn later on after his death that it was from his internal pouch that caused his problems. My father in law was a strong person and never let his condition get to him. I saw him battle with IBD for years and it gave me some sort of inner strength. We never discussed IBD which I now regret.

His death hit me hard, but I had to be strong for my wife and mother in law. I couldn’t let myself break down so I never really got to grieve. For the rest of the year I would think about him and my own struggle with CD. Then in December I got sick. I was taking antibiotics and Metformin (for my blood sugar). I was in bad shape from the two. By January I was getting worse. I would be going to the bathroom 30 times a day and in pain. Depression again sank in. I was at the point that I didn’t know what to do. Med were not helping me at all. No one knew what to do. I was convinced my guts had finally gave up and that they were going to have to come out. My father in law kept coming to my mind and his struggle and I fell so deep into depression. I am 38 and have my whole life still ahead of me. I didn’t want to end it with more problems.

Finally, a switch clicked in my head. It finally hit me that I have CD. For 23 years I never really accepted it or dealt with it. I didn’t even know what a truly had. So I went onto the internet. I did a lot of research. I looked at pictures of what an ostomy bag was (first time I ever did that). In my research, I stumbled upon some great strong women on YouTube that gave me strength. I found a number of social websites where I found I wasn’t alone. I finally realized just what my purpose is and what I had to do. I was going to advocate and educate. I wanted to help the millions of people out there with IBD.

So, here it is May 2012. The one year anniversary of my father in laws death in upon me. And this time, I won’t get a deep depression. I will get strength from it. I know he would be proud of me for what I am doing.

I now know that depression is normal with IBD. We all feel it. The trick to it, is to not let it run our lives. We must acknowledge it and get strength from it. Sometimes, we need to seek some professional help and that is ok. I now know that. Sometimes, we need to take meds for the depression, and again that is ok. It just means you are aware that you have it, and you can grow from it.

Do let depression run your life. If you get it, acknowledge it and seek out help. It can be professional help. It can be the help from a friend. It can be from online…but get help. It is normal to feel it. Just remember you are not alone.

A Man With Crohns (Repost)

May12

I originally posted this on May 31 2012. I thought this would make a nice repost. I chose this one to repost because within the past year I have gotten many followers and most are women. When I first started to advocate one of my goals was to get more guys to open up. I have to say, within the past year I have met a lot more men (and boys) with IBD but I almost feel like it is a woman’s club 🙂 So, this was my guys take on IBD.

When I hear the word manly or macho, I tend to think of a guy, muscular, wearing a sports jersey, sitting on a couch surrounded by friends, chips and dip on the coffee table, watching football. I probably got this image thanks to numerous commercials depicting this. Some people may have a different image. Some tend to think of a tall lumberjack in plaid. Some may think of a fireman running through flames or a cop rescuing someone. Still others may think of a soldier in uniform fighting for his country, saving innocent people caught up in a crossfire. My point to this is no one thinks of a guy laying in bed double over in pain who has to jump out of bed to run to the bathroom. Then on his return trip to the bed, picks up a garbage can to vomit.

Sadly, that is what a lot of us go through with Crohn’s Disease. Growing up in the 80’s I was what we would now call a nerd. I was into video games, Dungeons & Dragons, playing with GI Joe figures and spend my Friday nights at Boy Scout meetings. I would watch some sports (Go Yankees). I never liked alcohol. I also was not a ladies man. I was never macho..but I was still a guy and acted as one. When I was 15 I got sick with Crohn’s and it would forever change me.

For about 2 weeks I was so sick I would stay in bed all the time. I lost a lot of weight and eventually ended up in the hospital where I got diagnosed. I was put on Azulfadine and eventually got better. When I was 16, I came down with pneumonia and this caused me to flare. I would not recover and missed my junior and senior year of High School. I was growing up, starting to form the person I would be and this was all taken away from me. I would spend my days in bed watching TV. I also started to learn to cook and do laundry since I was home and had nothing better to do. Let me tell you…this does not make you feel manly or macho.

Flash forward 23 years. I am now a grown adult still battling with Crohn’s. I have found my way in the world. I met the woman of my dreams. I do feel like a man now. I still love my Yankees and try to go to some games every year. I still cook, but that has become a man’s job now (Bobby Flay, Emerel Lagasse, Guy Fiere, Mario Batalli just to name some). I like beer (miss my Sam Adams now that I am gluten-free).

But I still have my pains. I still run to the bathroom. What my point is, as a guy, we can’t worry about image. We don’t have that luxury. Guys…you can feel weak. At times you will get depressed. You will have pain. You will have a fever. For some of us, we will spend time in a hospital unable to control anything. None of this make you less of a man or a person. Do not let social media tell you how you should be. You are a man no matter what. You are strong and can get through anything. If anyone tells you otherwise, then they aren’t worth your time.

It is not week to break down and cry sometimes. It is not weak to have pain and suffer from depression. It is human. We all go through it. You are not alone. You are still a man…no matter what.

The Health Activist’s Writers Month Challenge – Day 30 Recap

Apr30

You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?

And another writers challenge comes to an end. Somehow this one was a little easier to write for then the last one I did. But, 30 posts in 30 days. Really makes me think of burnout. Not the pit of despair that I talked about on day 20, but writers burn out. It isn’t easy to come up with 30 posts so fast. I was given the topics which help but just trying to think of what to write puts a toll on the mind. After this I need to take another break.

Looking back over the post I see I had some pretty decent ones. I think my favorite one, and it wasn’t the longest or the best written, was Day 5 Aspiration. The more I talk about what I want to do in the future the more excited I become. Just the other night I was talking to some friends about my dream and they really got me excited over it. It feels good to have something to strive for in life.

Now, for my least favorite..well this is a hard one. I think my least favorite was Day 25 Learning. It isn’t that I didn’t like the post. It is my least favorite because it is the first time my post caused a controversy. I got a lot of messages about this one and about what ME is. I kind of jumped the gun when I wrote the post and didn’t do the research first. But, as a writer not everyone will like what you have to say and will let you know that. So I guess that post helped bring me up in status. I feel I am in the Big Leagues now.

As for what have I learned…well I did learn about a new disease (ME). I literally learned from my mistake. I also learned humility and how to accept that I did something wrong and admit to it. After all, I am human and we all make mistakes.

So, as the challenge ends so does this post. Spring is in the air and I will probably be stepping away from the computer for a bit to enjoy the season. But don’t despare. There is a lot going on in my life and I know I will have more to talk about soon. So until then, go out, enjoy the day….and see you soon.

The Health Activist’s Writers Month Challenge – Day 29 – Congratulations

Apr29

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

This is a hard post for me to write. I don’t like to praise myself and tote my achievements. I am a quiet person and keep a lot to myself. But for this, I will try to open up a little more and bring you more into my world.

1. One thing I am great at…or I like to think I am…is cooking. I took culinary arts in college and have a degree in cooking as well as management. I may not be the best but I think I can handle my own in a kitchen. Sometimes I have trouble thinking of dishes to make, but I can definitely take a recipe and make it my own.

2. One thing I love about myself is how I have been able to open up so much. Growing up I kept a lot of things to myself. I was a very closed off person. No one really knew what was going on in my head. This blog has really helped me to open up. What has really opened the flood gates to my emotions is my IBD community. Everyone I have met, whether it is in real life or on the internet, have been non-judgemental and always have an ear for me. This in turn has helped me to do the same for everyone else. I am so happy to have found my community as you have all helped me grow.

3. One thing I want to share is that even though I have grown I still want to be a better person. I want to do more to help. Throughout the years I have always felt something was missing from my life and now I know what it is. Helping others is so rewarding spiritually. One thing I still want to do is start a charity but I need a lot of help with that. The one thing I need before I move forward is a board of directors. Once I get that, I plan on moving on it. I have tons of ideas…just need the help.