I Have Reached My Boiling Point

Jan24

Yesterday I came across an article. It started because I was wondering how voting for the Restroom Access Act, aka Ally’s Law, went in Virginia. I looked it up online. I was appalled at what I had found. The act was defeated without a single vote cast. That means that every politician that had the right to vote on it agreed that it wasn’t worth their time to even discuss. I was outraged by this but was soon about to get even more pissed off.

Continuing my research I found and editorial written for a Virginian newspaper. It was written by Kerry Dougherty and can be found here. Please go read it. I will wait until you finish reading it.

…

So you finished it. I can see how red your face is. I guess she made you as mad as I have been for the past 18 hours. How can someone be so ignorant not only to people with IBD but to me it seems like she is against anyone with a disability.

But lets break down some of what she had to say. First, she writes, “And it marked the death of one more over-the-top, well-meaning measure cooked up by a Northern Virginia Democrat. Another bill that would have attempted to legislate common sense.” – First, does it matter if the person introducing the bill is a Democrat or Republican. What just because a Democrat introduces something it is immediately bad? Next, a bill that would attempted to legislate common sense. Yes, it is common sense and yet it is ignored. Why do we have to fight to use the bathroom. IT IS COMMON SENSE and yet people will still not let you use their bathrooms so yes we should have a law.

“The impetus was an Alexandria teenager who was diagnosed with Crohn’s disease about two years ago. After being barred from the employee-only bathroom in several retail stores, he told his mom he wanted a state law that would make it illegal to turn away someone with a legit medical condition.” Man, this just shows the author didn’t do her homework. HE TOLD HIS MOM—-Ally is a woman, not a man. I have spoken with her and she is amazing. Follow Ally here on Twitter. See, she is a woman.

“If only adults or civics teachers would teach kids that there are better ways to fix problems.” – Um, Ally found a problem and is fighting for the government to back her in her fight against injustice. What better way is there to fix the problem? I would love the author to suggest just one way.

Lastly, the author goes on to tell a story of how she was in a nail salon one day. A woman came in to the place, looking like she was in an emergency and asked to use the bathroom. Afterwards it turns out she stole some wallets. So, now everyone with IBD is being compared to thieves and criminals. None of us can be trusted. WOW!

I have seen a lot of prejudice in my life. I have seen discrimination. I have seen bigotry. This editorial takes the cake though. Just weeks ago the CCFA launched a campaign which so many of us agreed was way to light. It showed that we mainly use the bathroom and that there are no other problems. Maybe if they had used a more aggressive campaign, Kerry would have a better understanding of what we go through every day of our lives. I won’t get into it as that is a whole other post. But Kerry’s ignorance shows the need for more awareness. IBD is still mostly unknown. People think we are making up our symptoms.

Shame on you Kerry. Shame shame shame.

Book Review – The Directive

Jan20

Lately I have been seeing a lot more books about IBD. I decided since I love reading to start reading some of these books. I have been impressed by the stories and I decided that maybe I should post some reviews. So, here is my first one for the book The Directive by Rosa Fontana.

I will start by quoting the synopsis from the back of the book. “Lynne McKay is a peculiar twenty something college student. A boring essayist with limited social skills, she is woefully unaware that she’s a recluse in the making. Having experienced life vicariously – only through the books she has read and over-analyzed – she is unprepared when her life is interrupted with the diagnosis of Crohn’s Disease. After being admitted to the hospital, Lynne must shed her introverted shell in order to survive. With an IV pole in hand and a VIP pass to the marble throne at the ready, she reaches out to an unexpected and insistent comrade, Peter, who suffers from the same disease but has penchants for mischief and empathy. During their time in the hospital together, Lynne must consider: is this diagnosis a second chance at life or is it her death sentence?”

My first thought when I saw this book was that it was written by a woman and is told through the eyes of a woman…so would this just be a mushy love story. Thankfully, I was wrong. The book focuses a lot on Lynne and her disease. It deals more with her battles while in the hospital. As I read the story I couldn’t help but feel some of the pain. She describes the disease, treatments, med reactions so perfectly. The author has Crohn’s disease so she was definitely using her experience. However, reading the story I almost felt like this was an autobiography. After talking to Rosa on twitter I would find out it was only based on some of her experiences and people she has met.

I thought this was an excellent read. I had a hard time putting the book down and found myself relating to the characters a lot. I didn’t want this book to end and I really hope she decides to write more about Crohns.

If you want to buy the book you can buy it here. Also, check out Rosa’s page and follow her on Twitter here. Out of 5 stars I give this book 5.

My First Real Attempt at Advocacy

Jan11

For the past year I have been doing my blogs, talking to people online and even participating in the CCFA’s Take Steps. Late December I decided to kick it up a notch.

I was reading a lot of stories online about people with IBD having to pull over on the side of the road to immediately relieve themselves because there were no rest rooms in sight. Now, this is of course dangerous and illegal. It can cause problems on the highways and can even get the person stopping killed by getting hit by a car.

So I am sitting there reading these stories and I start to think of my experiences travelling on the interstates. I think about how you can go for miles without any exits or rest stops. The wheels in my head started turning and I had an idea. I started first by emailing my state representatives. Of course I got no responsive. I asked for assistance from some people on line and they helped me with thoughts and getting a letter drafted. Lastly, I started a petition online.

You are probably now wondering what I am talking about. Well, I am now starting a campaign to get port a potties put on the side of interstates and thruways. The petition can be found here and if you live in the USA, please go ahead and sign your name to it.

Now, if you have stopped and read the petition, you probably have a lot of questions about it. Yes, there are security issues, sanitation issues, etc etc etc. I know there is a lot that has to be worked out with this project. I don’t discredit all that. This petition isn’t meant to be a simple solution fix. I meant for this to be the start of something. It is made to get the ball rolling and make people see that there are major issues on the roadways for people with IBD.

If you can, write your congressmen and senators. Let them know of the petition. Let them know that we are no longer going to sit by and be ignored. It is time for us to raise our voice and be heard.

My Take on the Escape The Stall Ads

Jan11

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.

The Great Experiment Part 2

Jan4

Last January I was in a nasty flare. I was going to the bathroom 30 times a day. I was obese with high cholesterol and high blood sugar. My body was a mess and I wasn’t treating it nicely. So, I decided to make some changes as many of you already know. I joined Weight Watchers to lose weight, which I was pretty good with. For the year I lost about 30 lbs. I also went Gluten-Free to help with my Crohn’s. I wanted to give my intestines a rest from the harsh fiber of wheat. Also, this was supposed to help in reducing my blood sugar levels. Lastly, and this happened later in the year, I switched meds. I went off Humira and started Low Dose Naltrexone.

For the most part everything was working well. I achieved what seemed like remission. I lost weight. I feel good and healthier. I was finally on the right track. And then it all came to a crashing halt. The Dreaded Holidays!!! Anyone that knows me knows I like to eat. Well, the holidays give me that opportunity. Pecan Pie, Pumpkin Pie, Chocolate covered anything. With New Years Eve, there is a lot of eating, then some drinking, then some more eating and yes, more drinking.

Well, it is now January 2013. My weight has been fine and I don’t think I have gained too much weight back as my clothes still fit. However, the past week or so I have been going to the bathroom more. I am not feeling as healthy as I should and I know the reason. I have been putting garbage into my body again and have completely looked away from eating right. I am now paying for it.

So now I know that diet most definitely plays a part in IBD. Today is Friday night. This weekend is my last hurrah. As of Monday I start up my experiment with nutrition and IBD and get back to eating correctly. I am going back onto the Weight Watchers plan. I am going to stop putting nasty chemicals into my body. I am going to start treating my body like it should be treated.

A lot of people still say that nutrition means nothing when it comes to IBD. I think I might have proven this past year that it does. When I ate healthy with all natural products I was doing great. When I started eating junk again, I felt like I was on the verge of a flare. I have learned a lot in 2012 and I know that I need to stop NOW. I need to practice what I preach.

So I will continue on my journey come Monday. I won’t look back. I won’t second guess myself and I won’t regret it for one minute. I want to be completely healthy. I want others to look and me and say, “If he can do it, then anyone can” because I couldn’t do it for so many years. I denied the nutrition connection and ignored my weight.

The holidays are done. My denial is over. I had my fill and now I need to continue my journey and my experiment. Welcome to Jeff 2.0. Time to take all I have learned and put it into practice. And there is nothing better on a journey than some company…so Who Is With Me?

Goodbye 2012, Hello 2013

Dec31

As we close the door to another year, I look back to see if I have grown this year. Of course I don’t mean physically, but mentally and spiritually. Every year I treat New Years Eve like any other day. I haven’t made a bid deal about it in years. This year I have changed inside and I now sit here reflecting on the person I have become.

I went into this year in the biggest flare that I have ever had. I was depressed, in pain and living in the bathroom. I was alone with my disease and felt like I had no one to turn to. I now exit this year in remission, running a blog to help others and feel like I am part of the best community out there. I am part of a group that no matter how they feel, they will still give all they can to help out others. It is a very unselfish community and one I am proud to be in.

This past weekend I was able to contribute to this unselfish community. An online friend who runs an ostomy cover company alerted a lot of people about a 9 yr old that was in the hospital. He had 2 ostomies and was having a hard time with them. Originally I was just going to donate a little bit to help cover the cost of the covers she was making for him. When I spoke with this friend she mentioned that he was in a hospital fairly close to me. I thought she wanted me to bring him the covers but she mentioned that maybe I could visit him. I don’t have an ostomy so I didn’t know how much of a help I could be but I put out a call online. 2 wonderful people stepped up to the plate. One, Michael A Weiss, is a seasoned hospital patient and is very big on patient advocacy. The second, Marisa Troy, is an ostomate and would be able to give any information that she could.

I was hesitant to go when I heard the kid didn’t necessarily have IBD, but after Michael and Marisa still were going, I knew I had to. It was the right thing to do. So Sunday, we all met at the hospital and visited one of the bravest 9 yr olds I have ever met. It went through so much with blockages, septic shock, seizures, surgery and just the mental anguish that goes with this. When we got there, he was sitting on a couch with his family. He was very shy but I could see the life in his eyes. I knew he was going to get through this ordeal. I could see the fighter in him. His mom’s told us his whole story and he has not had an easy life.

After our 90 minute visit, I knew I did the right thing by going. It felt so good. He might not have said much and didn’t interact with us but I think we helped out his mom’s a lot. I think we eased their minds a little and gave them not only some answers but hope. They said that he felt so alone and now both him and his mom’s will know that no matter what, he is never alone. There are tons of us out there willing to help….no matter what.

So I sit here looking back and I see that this year I definitely grew. My heart and mind are bigger now. I understand the whole “holiday spirit” thing. Doing good things unconditionally feels great and makes me want to do more. I ended 2012 on a great note and I hope to continue going into 2013. I don’t know what this year will bring but I know that I still have room to grow….and I look forward to it.

You only get 2 feel #Humanity when U GIVE of urself. Visit a kid in a #hospital. http://bit.ly/UhiWFg #26Acts

Such a Loving Community I Live In

Dec18

Last night I went online to check my email and saw I had a mention in Twitter. I shot over to Twitter to see @Caringforcrohns nominated me for a Reality Blog Award. I didn’t know what this was until I read about it, and I have to say that I am honored by it. It just shows how much love there is in our IBD community.

reality-award1

Of course there is a guideline to the award. You have to answer 5 questions which I am more than happy to do.

1. If you could change one thing what would you change? If I could change one thing, it would be teaching doctors how to relate to patients. A lot of doctors don’t actually listen to their patients and treat them based on how they were taught. Many are unwilling to use non-traditional treatments or won’t use the newest methods because they don’t know about it. Doctors need to listen to us, the patients, and if we want to try something, they should learn more about it and support us. Support will ease our minds and this will help the healing process.

2. If you could repeat any age, what would it be? This is hard because I have learned not to dwell in the past. But if I really have to choose, I would be 18 again. I would love to be young and redo my college years. They were care free days where my Crohn’s didn’t bother me that much. I learned so much about my self that I would love to rediscover it all again.

3. What one thing really scares you? One thing that scares me is my lack of good reactions to meds. I don’t react well to almost all the Crohn’s meds out there so there really isn’t much for me to take. If I fail on my current med, LDN, there is nothing for me to try next. That means my Crohn’s can get worse and put me in a hospital. That really scares me. But I have to stay positive and right now, I am doing well. There is no reason to believe this won’t last.

4. What is one dream you have not completed, and do you think you’ll be able to complete it? One of my dreams is to open my own restaurant. Right now, being gluten-free, I notice it is hard to eat out and I would love to open a completely GF restaurant. I don’t know if I will ever get to do it. The one thing that stands in my way is the money. I need an income and don’t have the money to open my own place. It is something I would have to work out…but maybe one day.

5. If you could be someone else for one day, who would it be? Honestly, there is no one I would want to be. I love being who I am and would not change it for the world. I think everyone should like who they are and strive to be the best they can be. Never give up on yourself.

So, enough about me. Now the real fun is here. I get to nominate some other people for the award. Here are my nominations in no particular order:

Alyssa from Love For Mutant Guts – http://loveformutantguts.wordpress.com/ No matter what is going on in her life, she will tell it to you straight. She doesn’t hold back and will even post the most unflattering pictures just to show you what this disease can do to a person. To me that takes guts and no matter how much of them she is missing, she has tons of them.

Sara from Inflamed and Untamed – http://www.inflamed-and-untamed.com/ Sara is probably the most recognized face of IBD. Everyone knows her and has watched her video. But most important is that Sara is inspirational. She has gone through so much and still manages to hold her head high. She manages to lift the spirits of so many people.

Kelly from http://sickgirldiary.tumblr.com/ – What can I say about Kelly. She is so young and has gone through so much. She is yet another inspirational woman who despite all the pain she is in, she manages to give out inspiration to so many people. She maintains her videos and website despite all that she is going through. Anyone that knows her knows that she has a love for life that she will never give up on and I am honored to call her a friend.

Amanda from http://stopthinkingstartwriting.blogspot.com/ – Amanda is one of those people who has been sick for years yet can’t seem to get a diagnosis. She has been in a ball in the corner of the room on the floor with no hope. But a light went on in her and she now has nothing but inspiration for people. Even without a diagnosis, she keeps moving through life and doesn’t let her pain stop her.

Julie from http://www.semicolongirl.com/ – Julie is such an inspiration. Despite have a disease and despite having half a colon, she is still out there being active. She runs a lot and just got involved with the CCFA Team Challenge run in Vegas. She shows everyone that an illness shouldn’t slow you down no matter what.

For the nominees – here are the guidelines in accepting the award.

Visit and thank the blogger who nominated you.
Acknowledge that blogger on your blog and link back to them.
Answer the 5 questions presented.
Nominate up to 20 blogs for the award and notify them on their blogs.
Copy and paste the award on your blog somewhere.

So, finally, I want to thank Caring for Crohns again for the lovely nomination. I am loving the love I have found in our community this year and I hope that this next year brings out even more from us.

Chicken Soup – Not Just Good For The Soul

Dec2

Yesterday started Crohn’s and Colitis Awareness Week and what happens…I get sick. Ok, it is just a cold, but still feel like crap. The weather has cooled down a lot and I am constantly feeling cold now. So what better thing to do then to make some nice hot chicken soup. Recently someone asked me how to make it. I sent them my recipe and now that I am making it I figured, let me take some pictures and share the recipe with you.

I know a lot of Crohnies like soup for when they aren’t feeling well and it helps to settle a stomach and rehydrate you. Also, I grew up hearing it called Jewish Penicillin so how bad can it be for you. The great thing about this soup is that it is naturally Gluten Free so I don’t have to worry about that.

So, without further delay, here is my chicken soup:

Ingredients:

1 Whole Chicken
3 Carrots
3 Stalks of Celery
1 Turnip
1 Parsnip
1 Onion
Fresh Herbs

Take chicken and wash it off. But into 1/4 ers and place in large soup pot.
Peel carrots and parsnip. Place into pot. Trim celery and turnip and add to pot. Peel onion and slice into 1/4ers. Add to pot.
Add any fresh herbs that you like. Some ideas are thyme, marjoram, oregano, parsley, basil and rosemary.
Fill pot with water and cover.
Place onto medium heat until water boils.
When water boils, add 2 tsp of chicken bouillon (I use the loose instead of cubes).
Reduce heat to a simmer and cook for an hour.
When done, turn off heat. Remove chicken to a plate. Remove any vegetables you don’t want to serve with the soup to a bowl. Drain any soup in the bowl with the vegetable and discard the veggies. Drain any soup from chicken.
Serve.

Now how you serve it is all up to you. I take my chicken and back it off with some spices. As for the soup, I make some gluten free pasta and serve the soup with that. I keep the carrots only. Some ideas are to add rice to the soup, chop up the chicken and add that back, or even make some matzoh balls for a traditional jewish soup.

Use a fresh clean chicken

1/4ered chicken

Veggies…yum

Cut up veggies and chicken in pot

Add Water

Finished Soup

Soup without all the veggies

Finished product with Gluten Free pasta noodles.

Crohns & Colitis Awareness Week – Dec 1 – Dec 7 2012

Nov30

Ok, I lied in my last post. Here is another one, but this will be short and sweet.

Starting tomorrow, we celebrate Crohn’s and Colitis Awareness Week here in the US. So how is everyone going to show their support. Here is one site that explains it best . Everyone should wear something purple this week. You can also wear one of your “Ask Me” shirts from The Great Bowel Movement, which is what I will do as I don’t really own anything purple. If you don’t have one, come here to buy one.

Go out, have some fun, and spread the love. While you do that, take some pictures and send them to me. I will post as much as I can on here for everyone to see just how great we are at advocacy.

Day 30 #NHBPM – What a Journey

Nov30

Here it is. The last day of National Health Blog Post Month. It also means the end of another month. Seems like just yesterday I was sitting here thinking about what to write for my first post and wondering how I was going to do 30 in 30 days.

Looking back over the month I see I have come a long way. I used to post about once a week and sometimes less than that. I would look at my screen and not really know what to write. It was definitely nice to have the topics given to us for the month so I didn’t have to worry about thinking about what topic to write about.

This past month has really opened my eyes. I have read a number of stories on other blogs and have gotten to know some fellow IBDers a little better. I also got to meet online some new people who really have some amazing stories. One of them, Sarah, did an interview for me which was posted 2 days ago. Sarah has come a long way in her journey and hopefully her little trip down the road will be easier now that she has our community behind her.

Speaking of journeys, I am thinking about the posts that were written about travelling with IBD. I touched on the subject in 2 posts and actually had a lot of people without IBD reading them. One response I got from my post on travelling was from someone with IBD and how on his bike ride through Spain he mentioned how he had to constantly stop on the side of the road. I have heard so many of these stories lately that it has inspired me to start to help make a change in the USA. (See yesterdays post).

Not everything was happy with the posts. I think about how open I became with my feelings. I let out how I am still torn up inside over the loss of my father in law. Writing about it helped me to realize that we all carry burdens with us, even when we aren’t thinking we are. Accepting these burdens and acknowledging them help make us stronger in the end and it helps me to be a better activist.

Being an activist. Something I never thought I would be. In the past year though I have had the urge to help others. My letter to new care takers is something I wish every new parent of a child with IBD would read. It came from the heart and experience. I was in such a dark place and no one knew it. I had so much going on in my head that I didn’t want to share with anyone. Now, I put it all down here for everyone to see and it truly makes me feel better.

Living stress free and free of burdens is something we all need to strive to do. We all need to find an outlet to release our stress and my dog definitely helps. Little Sable is such a great dog. I don’t know how I ever lived without one before. She can’t take away the burdens but she makes the stress just melt away.

And all of this brings me back to the first post of this series – Why I write about my health. I write to relive my burdens. I write so I can see my problems on paper and it makes it easier to tackle them. I write to tell my story. But most important, I write because of you. I write for anyone that reads these post and realizes that they are not alone.

Thank you, whoever you are, for reading and possibly sharing these posts. I hope I have eased your mind of your problems and taken some of your burdens. I have come a long way in 30 days and have shared so much. In 31 days, we have a new year. Hopefully, we can lean on each other more for support and really bring our community together. I look forward to the day when we can come together in a large crowd, stand tall, raise our hands in the air and say ” I have IBD and I am proud of it”.

Now that the month is done, I will probably take a small break from writing. Holidays are coming and work is busy. Life doesn’t stop though regardless of the times and if something pops into my head, you know I will be back here. I look forward to the upcoming year and the challenges that it brings.