World Rare Disease Day


Today is World Rare Disease Day.  One of the first things I thought when I heard this was, “Do I fall in this category?”  Yes I have a disease but is it considered a rare disease?  Just because so many people have no idea what IBD is doesn’t necessarily make it rare.

According to the National Institute of Allergy and Infectious Diseases (NIAID), a division of the US Department of Health and Human Services that accumulates and publishes the statistics for Crohns disease and other health problems, one in 500 people suffer from Inflammatory Bowel Disease (IBD), the group of diseases that includes Crohns syndrome and ulcerative colitis. The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) reports similar numbers. Approximately 544,000 people suffer from IBD in the United States. There are typically three or four new cases per 100,000 people reported annually.  – Article Source: http://EzineArticles.com/289309

Looking at those numbers, 1 in 500 people suffer from IBD, I would say no.  But go online to a social media site like Twitter and anyone with IBD is proudly letting everyone know they are celebrating the day.  As much as I love advocating for my disease and help bring awareness to it, is it right to drown out others trying to raise awareness for really rare diseases?

As I was pondering this at 8:00 in the morning, I was forwarded an article found here http://bites.today.com/_news/2013/02/27/17121375-restaurant-to-non-patron-you-must-pay-to-pee?lite  This isn’t necessarily about any illness but anyone with IBD understands the problems with this kind of thinking.  And that leads into how so many people don’t know about IBD. 

So is it a rare disease because people don’t know about it?  About 10 years ago most people probably didn’t know what HPV was.  Now it is known that it is the main cause of cervical cancer.  It wasn’t a known disease yet it was far from rare as it was determined that almost everyone that has had sex has at one point in their life had the disease.

I talk to a woman online who is pretty big in the IBD community.  She suffers from a condition that causes inflammation all over her body.  Everyday is a challenge for her.   No one even knows how to treat it at this point because not that many people suffer from it.  To me, this is a rare disease.  This is something we should spend the day talking about and educating people on.

I love advocating.  I love everyone I have met doing it.  I talk to so many great people who have decided to speak up for IBD.  We have a big community and we are becoming very vocal.  But are we rare?  I wish I could say yes, but we aren’t.  I think we need to put our needs aside for one day and focus on those that really need help, because with rare diseases, there is little help out there.  There are almost little amounts of treatments available and even less cures.  For us with IBD we have a lot of options, even if they aren’t helpful.  There are many that suffer with no treatments available.  Today I will think of them and hope for some help.  It is the least I can do.

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Wego Health HAAWards Finalists


I know I haven’t written much in the past month.  I have been really busy with so many things that I haven’t had the time to come on here.  But, I do now and I have great news (well, great for me)  🙂

Last year Wego Health opened up nominations for their Health Activist Awards and I was nominated for the Ms?Mr Congeniality award.  This past week they announced all the finalist and I made the cut.  So I am now one of 5 finalists.  Sadly I am not up for any of the other awards I was nominated for but that is ok.  Just being nominated is an honor.

So, I was sitting here thinking about this award and just what the category is all about.  Mr. Congeniality.  Anyone that knows me might say I am far from this in real life.  I can be very loud at times and even rude.  I would have to agree with those people because, yes, I am.  I know I am and I am ok with it.  But online, I am another person.  When it comes to an illness, you have to be different.  I don’t mean in a talk in hush tones and walk on eggshells different.  It is just that I know what it is like to be sick with a disease no one really understands except for the people with it.

Part of going through life with IBD is that no one can see it and most definitely most people don’t understand it.  Heck, CCFA wants to show everyone it is a pooping disease.  Because of this many of us are depressed, angry and just can’t cope.  It isn’t easy to deal with a disease when no one around you can help you out.  I understand all of this and I know if I spoke to anyone with IBD in a nasty tone, it would not go well.  So I have to alter who I am.  When it comes to people with any illness, I turn into a caring person.  I used to not want to deal with illness but now, I have made it a part of my life.  And I am using it to grow.  Because I change who I am to people online, I am trying to be a better person in my real life also.  I am trying to be more caring, more understanding and less abrasive.

People online see me as a congenial person and when my wife saw I was nominated for this award she laughed.  This really hit me as it was really then that I noticed I was two different people (that’s the Gemini in me).  So just being nominated for this award has already helped in changing me.  I am now trying to be a better person.  Not just to sick people, but to everyone.

As for the award, I share the honor the honor with some other people who have now opened my eyes to some other illnesses that I didn’t even know existed.  I hold nothing against these people even though I am battling with them for the award so I want to share who they are and their site.  They are:

Barby Inglewww.barbyingle.com

Pamela Sloatehttp://dystoniamuse.com/

Peachy Painswww.peachypains.com

Tosha Sisler – www.bottledtime.wordpress.com

Good luck to everyone for the final spot and no matter who is given the award, we are all winners.

Gluten Free Rant


I went out to eat this weekend and something jumped into my head that really got me thinking.  Many restaurants are now serving gluten-free meals.  They recognize there is a big issue out there and they are now catering to the many people out there that can’t or won’t eat gluten.  I like that.  I am happy for that.

I work in the hospitality industry.  Maybe one day I will own my own restaurant.  What I know is that when you open a restaurant and create a menu, you can’t keep that same menu forever.  You have to change it over time to keep up with trends and what the customers want.  Many restaurants do this and are now moving to keep up with the gluten-free movement.  This is a good move on their part.  There are even gluten-free restaurants which I think is great.

Now, here is my rant.  I went into a big national chain restaurant (who will remain nameless) and they had a gluten free menu.  I loved it because items I thought had gluten in them on the regular menu turned out to be gluten-free.  I placed my order (my wife ordered from the regular menu) and then they brought out the bread.  Before I went GF I loved their bread.  Now, I looked at it and drooled knowing I can’t touch it.   On another day I was in a diner and again, the bread basket comes out with delicious looking items.

With this big push to be Gluten Free sensitive the one thing that hasn’t really changed is the bread basket.  As anyone on a GF diet knows, this item is a major no-no.   Bread is a big component of gluten.  So why isn’t anyone focusing on this item.  This is one item to change very easily.  There are tons of GF breads and rolls out there.  There are GF bread sticks and crackers.  Why can’t restaurants include these items for us GF customers.  Why are we forced to either drool over the regular bread baskets or sit there alone.    Now, I am not asking these restaurants to make their own.  I know there are many places that are real small and don’t have the kitchen space.  I am fine with that.  But you can buy them and put them in their own basket for us GF dieters.

What also gets me is in the chain restaurant they at least asked if we wanted the bread.  In many places they don’t ask. I know first hand bread costs have gone up.  If they would stop bringing out the bread automatically they would probably save money which they can spend on the GF bread.

Eating out in a restaurant should be an enjoyable experience.  I used to love going out to different places.  Since going GF I enjoy it less and my selection of restaurants have decreased.  Being teased at a restaurant makes the experience even worse.

Ok, rant over.  And now I want a slice of bread.

Gluten Free Beef Stew


It’s been awhile since I said I would post recipes so, here is another gluten-free recipe which is pretty IBD friendly..or at least for some IBDers.

Being that the temperature has been in the 20’s and I have been freezing my butt off lately, I wanted something that would be satisfying and warm me up.  I was getting tired of my usual weekly menu and needed a change.  When I was online one day, I saw a recipe for beef stew for a crock pot and I thought, I don’t have a crock pot but I can still make the stew.  So, I went out shopping, got the ingredients, and made way to much stew.  But is was so worth it because it was soooo good.  And the cold will be around for a while so I have meals for another day.

Now, for the recipe, I didn’t measure out anything and it made about 8 servings.  This is a dish that exact measurements aren’t needed and you can add whatever you want.

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Ingredients:

  • 1 1/2 lb cubed steak
  • 3 Carrots – peeled and rough chopped
  • 6 Celery Stalks – rough chopped
  • 1 Parsnip – peeled and rough chopped
  • 2 Large Potatoes – peeled and rough chopped
  • 1 Onion – peeled and rough chopped (pearl onions work well also and require no prep)
  • 1/2 Frozen Peas
  • 64 oz Beef Broth
  • 2 cans Diced Tomatoes
  • Olive oil
  • Gluten Free Flour or Corn Starch SAMSUNGSAMSUNG

Take your steak and coat in either the corn starch or flour.  I decided to use flour just out of personal preference.  Heat oil in a large stock pot and sear off meat.  You don’t want to cook the meat all the way through, just brown it.  You are sear it to seal in the juices.  Also, you can do this in batches if the pot isn’t large enough.

SAMSUNGSAMSUNGAfter the meat is browned and removed from pot, add onions and more oil if needed.  Saute the onions until soft and translucent.  If you are using pearl onions, do not do this step.  They will be added at the end.

SAMSUNGSAMSUNGWhen the onions are done, add some flour to make a roux.  Cook this for a couple of minutes until the roux starts to brown.  Add carrots, celery, parsnip, potatoes, beef, and stock.  Stir well.  Add any seasoning you like.  They can be fresh or dried.  I added some basil, oregano and salt.  Again this is to your preference.   Bring the stew to a boil.

SAMSUNGSAMSUNGWhen it boils, reduce heat to a simmer, cover and let cook for about 1 1/2 hours.  When the stew is done, add the canned tomatoes and peas.  If you are using pearl onions, add them also.  Bring back to a boil and remove from heat.  If the stew is still thin and not to your desired thickness, make a cornstarch slurry to add to it to thicken it up.  Serve with some nice crusty bread.

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I Have Reached My Boiling Point


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


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.The Directive

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


 

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.US DOT - Federal Highway Administration: Create Port-A-Potty rest stops on side of Interstates and Thruways

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.