There are many ways to learn lessons. When we are little we get our beginning lessons from parents, family members, teachers, and friends. As life goes on we learn from experiences, repetition, and sometimes strangers can be the bearers of a life lesson. But the lessons that stick with us are the ones where you seriously f'ed something up. Hence the title of this post. I not only f'ed something up but I have since learned from it, am still living with the repercussions of it, and am still berating myself over it.
In order to keep my Crohn's disease at bay I take a medicine called Humira. Humira is what they call a TNF-inhibitor drug. TNF, or tumor necrosis factor, is a protein molecule that can promote inflammation in the body which can cause autoimmune diseases. A TNF-inhibitor drug does what it says, it inhibits these molecules which helps the body to not develop flares.
There are many types of TNF-inhibitor drugs out there such as Remicade, Enbrel, and Cimzia, and they are used in cases of rheumatoid arthritis, psoriasis, and Crohn's. In fact, some of you might have seen the new Humira commericals or the Enbrel commerical with golfer Phil Mickelson who suffers from psoriatic arthritis.
One of the differences in these drugs is how they are administered. Remicade, for instance, requires a visit to the hospital for an infusion. I'm lucky enough to use Humira which is an injectable medicine I can use at home. Very quick and convenient.
When this trip to England came about my first concern was traveling with Humira as it has to be kept between 36 and 46 degrees Fahrenheit. Not only that, I now had to go through TSA at the airport and customs in Manchester. How would they deal with Humira? And so, the research and testing began.
I called TSA and they told me that if I were to travel with an ice pack, it must be frozen completely. Any sign of thawing and they would confiscate it. Ok, no problem. I then called the airline and they told me they would be happy to accomodate my medicine on the flight over to England. Great. I also got a letter from my gastroentorologist explaining why I was on Humira and I had my prescription as well. Things were coming together.
So my mom bought a travel bag that contained removable ice packs and I tested it against the travel bag I already had with built-in ice packs. After four days we came to the conclusion that the smaller bag stayed cold longer and the ice packs remained frozen longer. Perfect.
Off to the airport we went. TSA didn't bat an eye when I told them I had injectable drugs with me. One hurdle was cleared so I breathed a sigh of relief and got on my flight to Atlanta. I knew the pack would stay cold during that flight so I didn't bother to get any extra ice for the bag. And then I was on my flight to Manchester. I spoke with a lovely flight attendant who brought me ice for my bag. Dry ice. Without giving it a second thought, I put the ice in between the two boxes of medicine in the bag, zipped it back up, sat back and relaxed.
Two hours later I checked on the bag and took the ice out since it was nice and chilly. I left the ice out for the remainder of the flight. As we were getting ready to land I thought I'd better get a bit more ice that would tide the medicine over while I went through customs, got my luggage, and drove to Chester. Everything went well. Until...
...my husband told me that I had probably frozen the medicine.
I quickly ripped open the boxes of Humira and took out each individual shot (or pens, as they're called) and looked through the tiny opening the pen has so you can see the actual liquid inside. One was fogged over. Crap. One was very sluggish when I turned the pen upside down. Double crap. The other two were frozen and starting to thaw. *%#*&@)) Every expletive known to man came out of my mouth. Sorry mom. :(
Rule number one about Humira: NEVER FREEZE IT!
I landed on a Saturday which meant I had to wait the weekend before I could call anyone. Two entire days of me beating myself up for doing the most stupidest thing on the planet. They were not good days despite the fact that I was now in a beautiful town in England.
Finally, Monday arrived. BUT! I can't call anyone until three in the afternoon because of the time difference. The people I had to call were six hours behind me. I decided to walk around town and kill some time getting to know the neighborhood. I did get my library card which was pretty much the only good thing to come out of the day. At three I made my way back to the apartment to start what would prove to be an annoying amount of phone calls.
First, I called my pharmacy. Verdict: they can't ship overseas because they cannot guarantee the integrity of the medicine. Fair enough.
Second, I called a nurse that works with patients that take Humira. Verdict: she was dumb. I'm sorry, but she was. She told me that FedEx doesn't ship overseas. Really? Is that why they have a fleet of airplanes? I was done talking to her at that point.
Third, I called my gastroentorologist at his office. Verdict: he wasn't in so I had to leave a message.
Fourth, I called my gastroentorologist on his private cell phone. I was desperate! Verdict: he was on vacation but more than happy to help. He did manage to tell me that none of his patients had ever done what I did. I guess I'm a cautionary tale in his office now. He said he would make some phone calls and call me back. About an hour later, he did. He wanted me to speak with the makers of Humira to confirm that I couldn't take frozen and thawed out Humira and I was to call him back.
Fifth, I called the makers of Humira. Verdict: You cannot take frozen and thawed out Humira. They've never done testing on it so they have no idea how the body will react to the medicine once it has been affected in this manner. Plus, the integrity of the medicine has been compromised so it would be like taking a placebo. Useless.
Sixth, I called my gastroentorologist back. Verdict: he was in contact with his Humira representative to see if he could get some samples for me. He asked me to call his assistant and she would help me in getting these.
Seventh, I called the assistant. Verdict: one of the sweetest people I have ever spoken to and she was more than happy to help. I can't tell you how nice it was to come across a helpful and cheerful person while in the midst of a crisis.
After nearly four hours of phone calls, I cried for an hour. Okay, I may or may not be able to get samples. If I did, how would they get to England? If I didn't, how much time could I go without Humira before having to go back home to get more? This was Monday.
On Tuesday my gastroentorologist called to say that samples were on their way and if I could have someone pick them up, they were mine. I'm not a religious person but I thanked whoever might be up there watching us. My mom was now on the case of getting the samples.
The issue of getting them to England was also resolved. But they were coming to London so my husband and I would have to drive over to get them.
Last Thursday we left for London, picked up the medicine, met up with some friends, and in 24 hours we were on the road, back home to Chester. And the medicine was good.
Bad news: I take a shot every other week so after taking a shot on June 1, the next one is due June 15 and then I'm out of medicine again.
Good news: There is more on the way.
I cannot even begin to thank everyone that has helped me with this ridiculously crazy matter. There are friends out there to whom I owe big favors. And not to mention my mom and my husband.
What did I learn from all of this?? DON'T FREEZE HUMIRA!!!! Lesson learned. I hang my head in shame.
To all of you out there that take this medicine and need to travel with it, it was pretty easy to get through TSA and on the airplane. Just don't take the dry ice the flight attendants want to give you. Ask for normal ice. And to all of us out there that take TNF-inhibitors, may the day come when we no longer need these drugs because maybe, just maybe, someone has found a cure to autoimmune disorders.
And with that I wish you all good health. And be sure to thank the people in your lives that you know would go that extra mile for you.
Showing posts with label Crohn's. Show all posts
Showing posts with label Crohn's. Show all posts
Monday, June 4, 2012
Friday, March 2, 2012
One Step Forward, Two Steps Back. And A Piece of Fantastic News.
So here I am during my second week of this new diet when WHAM! I hit the wall yesterday. Everything was going great - no stomach pains, no bloating, and my sleep had improved - and all of a sudden a hurdle is placed in my path.
I've grown quite tired of eating tuna fish so I thought I would give sardines a try since they are a diet-approved food. Along with the sardines I had a bowl of carrot and butternut squash soup. I know, it's a weird combination but I wanted to have something along with the soup. I had dinner, all is good, and one hour later I am doubled over in pain.
Oh oh, The Pain is back. And yes, it comes with capital letters.
The Pain starts right underneath my ribcage and sometimes it moves around but last night it stayed in one spot. Imagine a 10" knife jabbed into your stomach and now it's being twisted around, back and forth, back and forth. Got it? Now, imagine another 10" knife being continuously stabbed right alongside the other one. That's what The Pain is. And with The Pain comes nausea and headaches from being stressed out over The Pain. Sounds like fun, right?
After a pain-free week and a half, The Pain came back with a vengeance. Even Ivan is scared of The Pain, it's that bad. I have to admit that I did cry a bit. Not from the pain but from the fact that I was doing so well and, as always, I feel that I'm fighting an uphill battle. As soon as I make some progress, I go sliding back down. And then I made myself stop thinking this way. I started looking at things logically. I introduced a new food into my diet and I got stomach pains from it. Therefore, don't eat sardines! As soon as I came to that stunning realization I sucked up the pain and did not allow myself to have a pity party. I will always have setbacks but as long as I learn from them and continue to move forward I won't find myself in a downward spiral of shame and sadness that further perpuates the decline of my health.
So my question to those of you with Crohn's or Colitis, what are your food triggers? Do you have any safe foods that you can always fall back on and won't cause you any discomfort? Or are there foods that were safe and your body no longer tolerates them? That is what happened to me and dairy. We are no longer friends and I'm sad to say that my cheese consumption has pretty much dwindled to nothing. And that is hard because I heart cheese.
And now on to something completely different and much happier!!
A dear friend of mine and fellow writer, Donna Volkenannt, has just won the Erma Bombeck Humor Writing Contest!! She brought in a delightful story entitled, "Honey, Can I Borrow Your Garter Belt?" to our critique group and now it is a winner! I couldn't be happier for Donna. You can check out her blog here: http://www.donnasbookpub.blogspot.com/.
And with that I wish you all a wonderful weekend filled with good reading and good health!
I've grown quite tired of eating tuna fish so I thought I would give sardines a try since they are a diet-approved food. Along with the sardines I had a bowl of carrot and butternut squash soup. I know, it's a weird combination but I wanted to have something along with the soup. I had dinner, all is good, and one hour later I am doubled over in pain.
Oh oh, The Pain is back. And yes, it comes with capital letters.
The Pain starts right underneath my ribcage and sometimes it moves around but last night it stayed in one spot. Imagine a 10" knife jabbed into your stomach and now it's being twisted around, back and forth, back and forth. Got it? Now, imagine another 10" knife being continuously stabbed right alongside the other one. That's what The Pain is. And with The Pain comes nausea and headaches from being stressed out over The Pain. Sounds like fun, right?
After a pain-free week and a half, The Pain came back with a vengeance. Even Ivan is scared of The Pain, it's that bad. I have to admit that I did cry a bit. Not from the pain but from the fact that I was doing so well and, as always, I feel that I'm fighting an uphill battle. As soon as I make some progress, I go sliding back down. And then I made myself stop thinking this way. I started looking at things logically. I introduced a new food into my diet and I got stomach pains from it. Therefore, don't eat sardines! As soon as I came to that stunning realization I sucked up the pain and did not allow myself to have a pity party. I will always have setbacks but as long as I learn from them and continue to move forward I won't find myself in a downward spiral of shame and sadness that further perpuates the decline of my health.
So my question to those of you with Crohn's or Colitis, what are your food triggers? Do you have any safe foods that you can always fall back on and won't cause you any discomfort? Or are there foods that were safe and your body no longer tolerates them? That is what happened to me and dairy. We are no longer friends and I'm sad to say that my cheese consumption has pretty much dwindled to nothing. And that is hard because I heart cheese.
And now on to something completely different and much happier!!
A dear friend of mine and fellow writer, Donna Volkenannt, has just won the Erma Bombeck Humor Writing Contest!! She brought in a delightful story entitled, "Honey, Can I Borrow Your Garter Belt?" to our critique group and now it is a winner! I couldn't be happier for Donna. You can check out her blog here: http://www.donnasbookpub.blogspot.com/.
And with that I wish you all a wonderful weekend filled with good reading and good health!
Wednesday, February 22, 2012
Caffeine, A Necessary Evil? And One Amazing Musical Discovery
So far, so great with my new diet! I haven't had any stomach pains (a few gurgles from Ivan but this new diet seems to be like Valium to him), I've been sleeping well, and I never feel full and bloated. I have also discovered the beauty of the baked sweet potato with maple syrup! Yes, I'm allowed to have maple syrup but that is the only sugar I'm allowed. And freshly squeezed lemon juice is proving to be a wonderful addition to my foods. I used to put it on fish or soups but I'm putting it on everything now and it's lovely. It's a wonderful, natural way to add a little zing to your food.
BUT, BUT, BUT...there is always a but. I'm not allowed to have any caffeine. Boo...I say.
Yesterday I went to my weekly critique group at a coffeeshop and had to deny myself the wonderful latte I always have. And on some days I even have them put in an extra shot of esspresso. Sadly, it was not to be this week. I'm on caffeine-free peppermint tea so that is what I had. Blah... But my lunch wasn't very diet friendly so I guess it balances out? Now I'm thinking that next week I'd rather have my usual coffee and no lunch.
Why, oh why is caffeine so good and yet so bad? Caffeine stimulates our central nervous system and makes us alert when drowsy and fatigued. It can also help us to focus better especially when trying to stay up late to study, work, or write the great American novel. But caffeine and Crohn's don't always get along. As with any food or beverage, caffeine affects people with IBS in different ways but from what I've gathered it seems to be more harmful than good. Caffeine triggers the movement of the smooth muscle in your large intestine which in turn makes you go to the bathroom more often which in turn can irritate the bowels of someone with IBS which in turn can trigger stomachaches or even worse, a flare.
But I don't have a large intestine! So guess what, caffeine does not make me run to the bathroom the way eating a piece of raw fruit will. Go figure... Which leads me to wonder if maybe having one cup of coffee a day to stave off the caffeine withdrawal headache is okay even though I'll be cheating on my diet. Does anyone out there with IBS have caffeine issues? I'd be very interested in hearing your stories.
Now, on to something completely different...
There is a commercial that premiered during the Super Bowl in which a Chevy Sonic is put through some crazy stunts. It goes bungee jumping, it gets thrown out of an airplane so it can skydive, and then it goes through some stunt driving thing. All the while there is this wonderful song playing called "We Are Young" by a band called Fun.. (There is a period after their name.) I became so obsessed with this little clip that I hunted down the band and bought the single. And then last night they were on the Conan show and they were awesome! I ran to the computer to download all of their music and have been listening to it all day.
The lead singer, Nate Ruess, has the vocal qualities of Freddie Mercury and the music is filled with horns and guitars. Listening to this music is like spending a day at the amusement park. You have ups and down on the rollercoaster and can go around in circles on the carousel. The music takes you on a journey and the lyrics are personal and relatable. Plus, there are a lot of references to New York City which is always a good thing with me. (Have I mentioned that it's the best city on Earth?)
Their second album "Some Nights" was released yesterday and their first album "Aim and Ignite" was released in 2009. Whichever one you start with, you will not be disappointed. This band is in a class of its own and I am so happy I have discovered them. Along with The Airborne Toxic Event, Fun. is now my new obsession.
Happy listening and good on-going health to you all.
p.s. For dinner I'll be having ground chicken meatballs seasoned with curry powder alongside green beans.
BUT, BUT, BUT...there is always a but. I'm not allowed to have any caffeine. Boo...I say.
Yesterday I went to my weekly critique group at a coffeeshop and had to deny myself the wonderful latte I always have. And on some days I even have them put in an extra shot of esspresso. Sadly, it was not to be this week. I'm on caffeine-free peppermint tea so that is what I had. Blah... But my lunch wasn't very diet friendly so I guess it balances out? Now I'm thinking that next week I'd rather have my usual coffee and no lunch.
Why, oh why is caffeine so good and yet so bad? Caffeine stimulates our central nervous system and makes us alert when drowsy and fatigued. It can also help us to focus better especially when trying to stay up late to study, work, or write the great American novel. But caffeine and Crohn's don't always get along. As with any food or beverage, caffeine affects people with IBS in different ways but from what I've gathered it seems to be more harmful than good. Caffeine triggers the movement of the smooth muscle in your large intestine which in turn makes you go to the bathroom more often which in turn can irritate the bowels of someone with IBS which in turn can trigger stomachaches or even worse, a flare.
But I don't have a large intestine! So guess what, caffeine does not make me run to the bathroom the way eating a piece of raw fruit will. Go figure... Which leads me to wonder if maybe having one cup of coffee a day to stave off the caffeine withdrawal headache is okay even though I'll be cheating on my diet. Does anyone out there with IBS have caffeine issues? I'd be very interested in hearing your stories.
Now, on to something completely different...
There is a commercial that premiered during the Super Bowl in which a Chevy Sonic is put through some crazy stunts. It goes bungee jumping, it gets thrown out of an airplane so it can skydive, and then it goes through some stunt driving thing. All the while there is this wonderful song playing called "We Are Young" by a band called Fun.. (There is a period after their name.) I became so obsessed with this little clip that I hunted down the band and bought the single. And then last night they were on the Conan show and they were awesome! I ran to the computer to download all of their music and have been listening to it all day.
The lead singer, Nate Ruess, has the vocal qualities of Freddie Mercury and the music is filled with horns and guitars. Listening to this music is like spending a day at the amusement park. You have ups and down on the rollercoaster and can go around in circles on the carousel. The music takes you on a journey and the lyrics are personal and relatable. Plus, there are a lot of references to New York City which is always a good thing with me. (Have I mentioned that it's the best city on Earth?)
Their second album "Some Nights" was released yesterday and their first album "Aim and Ignite" was released in 2009. Whichever one you start with, you will not be disappointed. This band is in a class of its own and I am so happy I have discovered them. Along with The Airborne Toxic Event, Fun. is now my new obsession.
Happy listening and good on-going health to you all.
p.s. For dinner I'll be having ground chicken meatballs seasoned with curry powder alongside green beans.
Sunday, February 19, 2012
A New Week, A New Outlook, and a New Diet
My mom has been reading a book called "The Inside Tract, Your Good Gut Guide to Great Digestive Health" written by Dr. Gerard E. Mullin and nutrionist Kathie Swift. It is my mom's goal in life to make me better so she recommended that I try a diet that was written specifically for people that are suffering from any form of IBS.
In the book you will find a Gastrointestinal Patient Symptom Assessment Tool, or GPS, that you use to figure out just how sick you feel on a daily basis. The book offers three diets, one more restrictive then the next, and your score determines where to start. I ended up with a very high score so off to The Specific Food Diet I went, also known as the most restrictive diet. But guess what? It's not bad at all!
In essence, all dairy and gluten have been omitted along with sugar, eggs, fiber, certain vegetables, raw fruits, and some herbs and spices. I can still eat chicken, turkey, a variety of fish, spinach, potatoes, sweet potatoes, yellow squash, zucchini, and others. These are things I already eat so I'm excited to try this diet. I eat simply prepared foods made with fresh, organic ingredients.
What encourages me about this diet is that I have been given a list of foods that I can eat instead of being told what NOT to eat. If you tell me I can't eat something with no other guidelines then I lose all interest and don't make an effort. I start with these specific foods for two weeks and depending on how I feel I can begin to introduce new foods on a weekly basis.
I am actually happy to have these foods to work with and am keeping positive that after one week I'll start to feel better. I think that may actually be the light at the end of the tunnel that I'm looking at. I have to start somewhere and this seems as good a point as any.
Tonight I'll be having Carrot Squash Soup with a nice salad of avocado and cucumber that will be dressed with extra-virgin olive oil and lemon juice. Not bad, huh?
For those of you with Crohn's or IBS, I highly encourage you to read this book. Dr. Mullin is a practicing physician at Johns Hopkins that specializes in Crohn's and encourages holistic healing and a lifestyle change in which all processed foods are removed. The more natural, the better.
I would like to finish off today's post with some lyrics from the wonderful Natasha Bedingfield. The song is, very aptly named, "Happy":
During my stressing I'm blinded to the lessons
That could be a blessing if I'd be confessing that the enemy
I'm trying to beat is hiding inside of me
Got my dreams, got my life, got my love
Got my friends, got the sunshine above
Why am I making this hard on myself
When there's so many beautiful reasons I have to be happy
And with that I wish you all good health and a great start to your week.
In the book you will find a Gastrointestinal Patient Symptom Assessment Tool, or GPS, that you use to figure out just how sick you feel on a daily basis. The book offers three diets, one more restrictive then the next, and your score determines where to start. I ended up with a very high score so off to The Specific Food Diet I went, also known as the most restrictive diet. But guess what? It's not bad at all!
In essence, all dairy and gluten have been omitted along with sugar, eggs, fiber, certain vegetables, raw fruits, and some herbs and spices. I can still eat chicken, turkey, a variety of fish, spinach, potatoes, sweet potatoes, yellow squash, zucchini, and others. These are things I already eat so I'm excited to try this diet. I eat simply prepared foods made with fresh, organic ingredients.
What encourages me about this diet is that I have been given a list of foods that I can eat instead of being told what NOT to eat. If you tell me I can't eat something with no other guidelines then I lose all interest and don't make an effort. I start with these specific foods for two weeks and depending on how I feel I can begin to introduce new foods on a weekly basis.
I am actually happy to have these foods to work with and am keeping positive that after one week I'll start to feel better. I think that may actually be the light at the end of the tunnel that I'm looking at. I have to start somewhere and this seems as good a point as any.
Tonight I'll be having Carrot Squash Soup with a nice salad of avocado and cucumber that will be dressed with extra-virgin olive oil and lemon juice. Not bad, huh?
For those of you with Crohn's or IBS, I highly encourage you to read this book. Dr. Mullin is a practicing physician at Johns Hopkins that specializes in Crohn's and encourages holistic healing and a lifestyle change in which all processed foods are removed. The more natural, the better.
I would like to finish off today's post with some lyrics from the wonderful Natasha Bedingfield. The song is, very aptly named, "Happy":
During my stressing I'm blinded to the lessons
That could be a blessing if I'd be confessing that the enemy
I'm trying to beat is hiding inside of me
Got my dreams, got my life, got my love
Got my friends, got the sunshine above
Why am I making this hard on myself
When there's so many beautiful reasons I have to be happy
And with that I wish you all good health and a great start to your week.
Tuesday, January 31, 2012
Putting Things In Perspective
Greetings everyone.
I start this message on a sad/scary/hopeful note. Yesterday I found out that the husband of a friend of mine suffered from a seizure and was taken to the hospital. I can't even imagine what she went through. To be in the ER not knowing what is happening and why and then having to explain it to your children. Today they are going home but surgery has been scheduled. Brain surgery! There is nothing scarier than that.
I've had a pretty rough week when it comes to health issues but I'm still here breathing and not in the ER or awaiting surgery. Talk about putting things in perspective.
When I was first diagnosed at 12, I became quite cynical watching my friends live life like nothing could ever go wrong. Granted, I didn't know what cynical meant back then but when I look back on my actions and words (the few I can remember) that's what I was. That is pretty young to start that kind of behaviour. My cynicism has only gotten worse with age. At 35 when the Crohn's diagnosis came, I was a handful! I have always been the pessimist in the group; the glass is always half-empty. But lately, I'll drink the water in the glass and complain that it's empty and wonder why it never fills up. This is an aspect of my personality that is very hard for me to change and I always assume that I'm the one that is going through the worst possible scenario. But I'm not.
My heart goes out to my friend and her family and my thoughts will be with her as they move on with the surgery and whatever life may bring them afterwards. As for me, yes, there is a lesson to be learned so I'll work on that. But be warned, I may not be here for long. I'm pretty sure there are some pissed off trees somewhere because I have gone through like 20 rolls of toilet paper in just two days!
So, as promised, here is the second verse to "The Wishing Song":
Now I don't have a coat of silk, but I still have the sky.
Now I don't have a lady, no, but there goes a butterfly.
Now I don't have a house of stone, but I can see the sea.
Now most of all I know that I am happy to be me.
I'm happy to be me.
What an appropriate message for me today. This is what I am working on. Being happy. Being me. And being happy while being me.
I wish all of you good health and happiness. And give that person or pet in your life a big hug and kiss. And be happy! Man, if only I could follow my own advice!! Do as I say, not as I do.
I start this message on a sad/scary/hopeful note. Yesterday I found out that the husband of a friend of mine suffered from a seizure and was taken to the hospital. I can't even imagine what she went through. To be in the ER not knowing what is happening and why and then having to explain it to your children. Today they are going home but surgery has been scheduled. Brain surgery! There is nothing scarier than that.
I've had a pretty rough week when it comes to health issues but I'm still here breathing and not in the ER or awaiting surgery. Talk about putting things in perspective.
When I was first diagnosed at 12, I became quite cynical watching my friends live life like nothing could ever go wrong. Granted, I didn't know what cynical meant back then but when I look back on my actions and words (the few I can remember) that's what I was. That is pretty young to start that kind of behaviour. My cynicism has only gotten worse with age. At 35 when the Crohn's diagnosis came, I was a handful! I have always been the pessimist in the group; the glass is always half-empty. But lately, I'll drink the water in the glass and complain that it's empty and wonder why it never fills up. This is an aspect of my personality that is very hard for me to change and I always assume that I'm the one that is going through the worst possible scenario. But I'm not.
My heart goes out to my friend and her family and my thoughts will be with her as they move on with the surgery and whatever life may bring them afterwards. As for me, yes, there is a lesson to be learned so I'll work on that. But be warned, I may not be here for long. I'm pretty sure there are some pissed off trees somewhere because I have gone through like 20 rolls of toilet paper in just two days!
So, as promised, here is the second verse to "The Wishing Song":
Now I don't have a coat of silk, but I still have the sky.
Now I don't have a lady, no, but there goes a butterfly.
Now I don't have a house of stone, but I can see the sea.
Now most of all I know that I am happy to be me.
I'm happy to be me.
What an appropriate message for me today. This is what I am working on. Being happy. Being me. And being happy while being me.
I wish all of you good health and happiness. And give that person or pet in your life a big hug and kiss. And be happy! Man, if only I could follow my own advice!! Do as I say, not as I do.
Monday, January 30, 2012
Hoping For A Better Week and DGL
Hello my fellow bloggers. I apologize for leaving you all high and dry for the past three days. I'm sure you were all sitting on the edge of your computer chairs just waiting in anticipation for my words of wisdom. Or my random nutterings about nothing. Yeah, I'm pretty sure it's the latter.
Last week was hell and today hasn't been all that great. After days of having a lingering stomachache, I ended up with some nasty pains in my belly. Believe it or not, Ivan had nothing to do with it. These nasty pains are due to a blockage somewhere in my small intestine. Because nothing is moving everything gets plugged up and causes unbelievable pains right underneath my rib cage and my sides. I've heard this from other Crohnies and aside from taking pain pills, there's not much to be done. We literally have to wait it out and it can last a few hours to days. In the very worst case scenario we end up at the ER and need emergency surgery. Knock on wood that I haven't had to go down that road. Yet another lovely side effect of Crohn's Disease.
I want to make it clear that I'm not telling you all of this because I'm fishing around for sympathy. I have a support system of wonderful people for that. I'm telling you because if there is someone out there that has these pains then you may have Crohn's Disease.
One of my go-to medicines during this time is DGL. Or you may know it as Deglycyrrhizinated Licorice. (Bonus points for anyone that can pronounce this word!) Licorice has long been used as an herbal supplement for people that suffer from stomach ulcers, heartburn, and other gastrointestinal issues. This specific licorice extract provides a protective coating for the mucosal lining of the esophagus, stomach, and intestinal tract. (Thank you Swanson Vitamins for this description. http://www.swansonvitamins.com/) If I feel any rumblings in my stomach after a meal I'll eat one or two of these tablets and it tends to calm everything down. Again, I am not a doctor so please take the time to talk to your doctor and research a product before trying it out. I personally take a DGL that has been flavored with cocoa but there are others out there that have peppermint or Stevia flavoring so look around for something you might enjoy chewing.
At times like these it's pretty easy to start feeling sorry for yourself. The typical questions of, "Why me?" or "Why can't I be normal?" are running through my head. I know it's a pointless thing to do but I can't help it and I'm sure there are others out there that ask themselves these same questions. I know that I can't change this disease but I'm hoping that I can change the way my body reacts to it and with every step forward there will always be steps back. I know this but I don't always want to accept it.
I leave you with a song I came across when the new Muppet Movie came out. It was originally sung by Gonzo to Madeleine Kahn back in the 70s on the original Muppet Show. It's called "The Wishing Song".
(And thank you to The Airborne Toxic Event for covering it on the soundtrack album!)
I wish I had a coat of silk the color of the sky.
I wish I had a lady fair and then a butterfly.
I wish I had a house of stone that looked out on the sea.
But most of all, I wish that I was someone else but me.
That's the first verse. I'll be back tomorrow with the second verse. But for now I'm going to feel just a little sorry for myself and then get over it. Everyone is allowed to feel this way but the important thing is to learn and move on.
Cheers and good health to everyone!
Last week was hell and today hasn't been all that great. After days of having a lingering stomachache, I ended up with some nasty pains in my belly. Believe it or not, Ivan had nothing to do with it. These nasty pains are due to a blockage somewhere in my small intestine. Because nothing is moving everything gets plugged up and causes unbelievable pains right underneath my rib cage and my sides. I've heard this from other Crohnies and aside from taking pain pills, there's not much to be done. We literally have to wait it out and it can last a few hours to days. In the very worst case scenario we end up at the ER and need emergency surgery. Knock on wood that I haven't had to go down that road. Yet another lovely side effect of Crohn's Disease.
I want to make it clear that I'm not telling you all of this because I'm fishing around for sympathy. I have a support system of wonderful people for that. I'm telling you because if there is someone out there that has these pains then you may have Crohn's Disease.
One of my go-to medicines during this time is DGL. Or you may know it as Deglycyrrhizinated Licorice. (Bonus points for anyone that can pronounce this word!) Licorice has long been used as an herbal supplement for people that suffer from stomach ulcers, heartburn, and other gastrointestinal issues. This specific licorice extract provides a protective coating for the mucosal lining of the esophagus, stomach, and intestinal tract. (Thank you Swanson Vitamins for this description. http://www.swansonvitamins.com/) If I feel any rumblings in my stomach after a meal I'll eat one or two of these tablets and it tends to calm everything down. Again, I am not a doctor so please take the time to talk to your doctor and research a product before trying it out. I personally take a DGL that has been flavored with cocoa but there are others out there that have peppermint or Stevia flavoring so look around for something you might enjoy chewing.
At times like these it's pretty easy to start feeling sorry for yourself. The typical questions of, "Why me?" or "Why can't I be normal?" are running through my head. I know it's a pointless thing to do but I can't help it and I'm sure there are others out there that ask themselves these same questions. I know that I can't change this disease but I'm hoping that I can change the way my body reacts to it and with every step forward there will always be steps back. I know this but I don't always want to accept it.
I leave you with a song I came across when the new Muppet Movie came out. It was originally sung by Gonzo to Madeleine Kahn back in the 70s on the original Muppet Show. It's called "The Wishing Song".
(And thank you to The Airborne Toxic Event for covering it on the soundtrack album!)
I wish I had a coat of silk the color of the sky.
I wish I had a lady fair and then a butterfly.
I wish I had a house of stone that looked out on the sea.
But most of all, I wish that I was someone else but me.
That's the first verse. I'll be back tomorrow with the second verse. But for now I'm going to feel just a little sorry for myself and then get over it. Everyone is allowed to feel this way but the important thing is to learn and move on.
Cheers and good health to everyone!
Wednesday, January 25, 2012
You Don't Look Sick
These four words are hands-down some of the worst to ever say to anyone that suffers from Crohn's, Colitis, or some form of IBS. It's true that we don't display our sickness on the outside. We're not sweating due to a fever or wrapped up in blankets due to having chills; we don't all look gaunt, emaciated, and pale; we don't cough out a lung or two and down Robitussin and Nyquil. We carry our sickness on the inside right alongside our suffering.
It's been a long time since these words have been spoken in my presence but I feel the need to address it today. I've been having stomach pain for the past 5 days and I could sit here and theorize what is causing it but like the disease itself, I just don't know. It doesn't matter what I eat, don't eat, when I eat, or how much I eat. It just hurts. The pain makes me nauseated, lethargic, and literally zaps all of my energy. My body is so busy trying to fight this entity that all it wants to do is sleep. But don't worry, I look fantastic on the outside! Well, maybe a little make-up would help too. So does that mean I'm not sick?
So the next time you see someone that looks great on the outside but may complain about a stomachache remember this: they might be suffering more than you know and it is taking all of their will power to just get through the day. And if you dare say these words, I warn you now, it doesn't matter how sick we are, we will kick your ass.
On a health note, I would like to talk about Curcumin. Curcumin comes from the spice turmeric and has many health benefits. My holistic healer, Dr. Stephen J. Feldman (http://www.ontohealth.com/), has me on it because of its anti-inflammatory properties. In my case it helps my small intestine during those times when nothing makes it happy. An extra dose of curcumin for a few days settles things down and I am then able to eat solid food again. Curcumin and turmeric has traditionally been used in Ayurvedic medicine to treat upset stomachs. Ayurvedic medicine holds its origins in India which incidentally, has a very low number of Irritable Bowel Diseases (IBD) amongst its people. I am by no means a doctor or pretend to play one on TV. Please do not take anything until you speak with a doctor and have read everything about it.
On a happy note, I leave you with some of my favorite lyrics. My new obsession is The Airborne Toxic Event, a band from Los Feliz, Los Angeles, California. From their song, "The Graveyard Near the House": "Cause it's better to love whether you win or lose or die. It's better to love whether you win or lose or die. It's better to love and I will love you till I die." I dedicate that to my husband who has to deal with a lot when it comes to me.
Good health everyone!
It's been a long time since these words have been spoken in my presence but I feel the need to address it today. I've been having stomach pain for the past 5 days and I could sit here and theorize what is causing it but like the disease itself, I just don't know. It doesn't matter what I eat, don't eat, when I eat, or how much I eat. It just hurts. The pain makes me nauseated, lethargic, and literally zaps all of my energy. My body is so busy trying to fight this entity that all it wants to do is sleep. But don't worry, I look fantastic on the outside! Well, maybe a little make-up would help too. So does that mean I'm not sick?
So the next time you see someone that looks great on the outside but may complain about a stomachache remember this: they might be suffering more than you know and it is taking all of their will power to just get through the day. And if you dare say these words, I warn you now, it doesn't matter how sick we are, we will kick your ass.
On a health note, I would like to talk about Curcumin. Curcumin comes from the spice turmeric and has many health benefits. My holistic healer, Dr. Stephen J. Feldman (http://www.ontohealth.com/), has me on it because of its anti-inflammatory properties. In my case it helps my small intestine during those times when nothing makes it happy. An extra dose of curcumin for a few days settles things down and I am then able to eat solid food again. Curcumin and turmeric has traditionally been used in Ayurvedic medicine to treat upset stomachs. Ayurvedic medicine holds its origins in India which incidentally, has a very low number of Irritable Bowel Diseases (IBD) amongst its people. I am by no means a doctor or pretend to play one on TV. Please do not take anything until you speak with a doctor and have read everything about it.
On a happy note, I leave you with some of my favorite lyrics. My new obsession is The Airborne Toxic Event, a band from Los Feliz, Los Angeles, California. From their song, "The Graveyard Near the House": "Cause it's better to love whether you win or lose or die. It's better to love whether you win or lose or die. It's better to love and I will love you till I die." I dedicate that to my husband who has to deal with a lot when it comes to me.
Good health everyone!
Tuesday, January 24, 2012
Two Steps Forward, Seven Steps Back (and two book reviews)
Just when I think I'm going to have a good health day, WHAM!, I hit the wall. All was well and good yesterday and so I had a little snack of cheese and crackers. This is my go-to snack and 9.5 times out of 10 will sit well. No sir, not yesterday. Within a matter of minutes I was bloated and felt like crap. Said crapiness continued on to the morning and is now finally gone. Almost 24 hours of not feeling well...sigh.
Sadly, this is something all us Crohnies go through. Sometimes we eat something that makes us feel great only to eat it again and have it almost kill us. And the weirdest part is that the same food will always have a different reaction in our guts and will affect each of us differently. Dairy (anything with lactose) is a big no-no for me and for many Crohn's and Colitis sufferers. Ice cream, whole milk, cream cheese, and sour cream will pretty much always do me in. But cheese has always been my friend. Well, not always. Lesson learned? No. I'll give cheese another chance and hopefully we'll get along next time. Anyone else go through this? What are your food triggers?
On another note, I did manage to finish two books this past weekend. Camilla Lackberg "The Ice Princess" and Caroline Preston "The Scrapbook of Frankie Pratt: A Novel in Pictures".
"The Ice Princess" is the first novel of Ms. Lackberg's to be translated into English from her native Swedish and is yet another entry into the uber-popular Swedish Murder Mystery genre. Our main character, Erika, has just discovered her former best friend murdered in their tiny hometown of Fjallbacka. An investigation begins, along with a romance between Erika and the detective, Patrik Hedstrom. And so on and so forth. A few twists but no surprises. Unfortunately, this doesn't hold a candle to what is already out there. This mystery is translated by the same gentleman that did "The Girl with the Dragon Tattoo" but he seems to drop the ball here. There were many extraneous words, point-of-view shifts, and unnecessary characters. Whether this is due to a poor translation or just a poor original manuscript, I don't know. There are more books that include Patrik Hedstrom but for now he'll have to wait before I come back to him.
I absolutely love, love, love "The Scrapbook of Frankie Pratt" and everyone must be required to read it. If that isn't enough to convince you then read it for the beautiful pictures and scrapbook memorabilia that is on every single page of this book. It's 1920 and Frankie Pratt wants to be a writer but ends up staying home to take care of her widowed mother after graduating from high school. But Mother has other plans and quickly sends Frankie to Vassar after a failed romance. From there Frankie goes on to New York City, then Paris, then back home. On every page you fall deeper into Frankie's life and before you know it, you're with her in New York City and on the boat to Paris. By the end of the book you feel like she's a member of the family and you just want to hear her stories over and over. Ms. Preston nailed it on the head when she decided to make this a "novel in pictures". This is definitely a book that will be re-read over the years and will just get better each and every time.
And with that I bid you all a great day, good reading and writing, but most of all, great health. Cheers!
Sadly, this is something all us Crohnies go through. Sometimes we eat something that makes us feel great only to eat it again and have it almost kill us. And the weirdest part is that the same food will always have a different reaction in our guts and will affect each of us differently. Dairy (anything with lactose) is a big no-no for me and for many Crohn's and Colitis sufferers. Ice cream, whole milk, cream cheese, and sour cream will pretty much always do me in. But cheese has always been my friend. Well, not always. Lesson learned? No. I'll give cheese another chance and hopefully we'll get along next time. Anyone else go through this? What are your food triggers?
On another note, I did manage to finish two books this past weekend. Camilla Lackberg "The Ice Princess" and Caroline Preston "The Scrapbook of Frankie Pratt: A Novel in Pictures".
"The Ice Princess" is the first novel of Ms. Lackberg's to be translated into English from her native Swedish and is yet another entry into the uber-popular Swedish Murder Mystery genre. Our main character, Erika, has just discovered her former best friend murdered in their tiny hometown of Fjallbacka. An investigation begins, along with a romance between Erika and the detective, Patrik Hedstrom. And so on and so forth. A few twists but no surprises. Unfortunately, this doesn't hold a candle to what is already out there. This mystery is translated by the same gentleman that did "The Girl with the Dragon Tattoo" but he seems to drop the ball here. There were many extraneous words, point-of-view shifts, and unnecessary characters. Whether this is due to a poor translation or just a poor original manuscript, I don't know. There are more books that include Patrik Hedstrom but for now he'll have to wait before I come back to him.
I absolutely love, love, love "The Scrapbook of Frankie Pratt" and everyone must be required to read it. If that isn't enough to convince you then read it for the beautiful pictures and scrapbook memorabilia that is on every single page of this book. It's 1920 and Frankie Pratt wants to be a writer but ends up staying home to take care of her widowed mother after graduating from high school. But Mother has other plans and quickly sends Frankie to Vassar after a failed romance. From there Frankie goes on to New York City, then Paris, then back home. On every page you fall deeper into Frankie's life and before you know it, you're with her in New York City and on the boat to Paris. By the end of the book you feel like she's a member of the family and you just want to hear her stories over and over. Ms. Preston nailed it on the head when she decided to make this a "novel in pictures". This is definitely a book that will be re-read over the years and will just get better each and every time.
And with that I bid you all a great day, good reading and writing, but most of all, great health. Cheers!
Monday, January 23, 2012
All right...here we go...my first official post on my new blog. (taking a deep breath)
Welcome to everyone that finds their way here! My main goal with this blog is to bring awareness to Crohn's, Colitis, Irritable Bowel Syndrome (IBS), and anything in between. I have come across many people that aren't familiar with what IBS is and I take pride in being able to educate them so we have one less ignorant person in the world. IBS can affect anyone at anytime - from babies to the elderly. There is no rhyme or reason for why your body just begins to attack itself and the worst part is that there is no cure. This is what is called an auto-immune disease and I'm sure many of you are familiar with other ones: Rheumatoid Arthritis, Psoriasis, Lupus, even Multiple Sclerosis. So, in order for the cure to show up we have to have awareness. And for awareness we have (drumroll, please): this wonderful blog!!
I encourage anyone who is suffering from IBS to talk and/or vent about their issues. Odds are, if I haven't been through it myself then maybe one of my followers has. There is nothing better than having a shoulder to cry on especially if the person attached to that shoulder has the same problems. If you happen to know someone with IBS please direct them here and take some time to educate yourself about what your friends or loved ones are going through.
Aside from that, I am also here to talk about writing, books, and any other interesting things that happen in my life. I am currently working on the great American novel (aren't we all my dear writer friends?).
And with that I bid you adieu. (waving like the Queen from the balcony of her castle)
I wish you all good health and wonderful days of writing! (or feel free to substitute your hobby for writing)
p.s. Thank you for my three followers!!
Becky Povich at http://www.beckypovich.blogspot.com/,
Donna Volkenannt at http://www.donnasbookpub.blogspot.com/,
and my acupuncturist and holisitic healer Dr. Stephen J. Feldman at http://www.ontohealth.com/
Welcome to everyone that finds their way here! My main goal with this blog is to bring awareness to Crohn's, Colitis, Irritable Bowel Syndrome (IBS), and anything in between. I have come across many people that aren't familiar with what IBS is and I take pride in being able to educate them so we have one less ignorant person in the world. IBS can affect anyone at anytime - from babies to the elderly. There is no rhyme or reason for why your body just begins to attack itself and the worst part is that there is no cure. This is what is called an auto-immune disease and I'm sure many of you are familiar with other ones: Rheumatoid Arthritis, Psoriasis, Lupus, even Multiple Sclerosis. So, in order for the cure to show up we have to have awareness. And for awareness we have (drumroll, please): this wonderful blog!!
I encourage anyone who is suffering from IBS to talk and/or vent about their issues. Odds are, if I haven't been through it myself then maybe one of my followers has. There is nothing better than having a shoulder to cry on especially if the person attached to that shoulder has the same problems. If you happen to know someone with IBS please direct them here and take some time to educate yourself about what your friends or loved ones are going through.
Aside from that, I am also here to talk about writing, books, and any other interesting things that happen in my life. I am currently working on the great American novel (aren't we all my dear writer friends?).
And with that I bid you adieu. (waving like the Queen from the balcony of her castle)
I wish you all good health and wonderful days of writing! (or feel free to substitute your hobby for writing)
p.s. Thank you for my three followers!!
Becky Povich at http://www.beckypovich.blogspot.com/,
Donna Volkenannt at http://www.donnasbookpub.blogspot.com/,
and my acupuncturist and holisitic healer Dr. Stephen J. Feldman at http://www.ontohealth.com/
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