For those with autoimmune diseases, it is sometimes hard to have a steady job, let alone participate in activities that depend on your performance every day.
For me, this comes by the way of theatre. For others, it may be athletics or music or something entirely different. You see, when your body is upset, it fights against you. If you are doing physical activities, your performance level is dependent on how well you can connect with your body. If your body doesn’t want to connect, or if it wants to hurt, you can’t necessarily control what it does.
Plus, with Crohn’s, there is always the possibility that you will have to use the restroom. At any time. Your life kind of becomes a symphony of restroom usage.
I once heard a story about an actor who was very sick. In order to keep herself from getting sick on her costumes (and not puke sick), she had to wrap herself in saran wrap. She soiled the saran wrap on stage, but it saved her outfits, and, she was able to perform like nothing was wrong. As they say, “The show must go on!”
That story absolutely terrifies me. However, it also is a good analogy for what it feels like to have urgency. You are wrapped in hot, sticky saran wrap that you have to get off, but you can’t always quite get the chance to take off the saran wrap. So, it just keeps getting more and more annoying until you either forget it is there or it burns you and you get sicker.
Now, I don’t have that big of a complication with my Crohn’s; but, this urgency during acting is common. Acting is added stress, and stress makes Crohn’s flare.
So, could extreme bowel problems be in my future? I pray dearly that it is not.
My point here is: when you live with an autoimmune disease, doing jobs or activities that are time dependent is a toss-up. If they are pulled off, that’s pretty cool...because, sometimes, we are in a race against our intestines’ time-clock. On the contrary, sometimes Crohn’s has pushed me to do things more urgently because I know that my condition could change at any time.
Tuesday, February 27, 2018
Thursday, February 22, 2018
There is Power in Stories
Today and over the last few days, I was messaged by some strong and wonderful human beings. Several of the stories that were shared with me drew me to tears.
I won’t share what people have told me unless they want their story to be know; but, I am writing today to advocate what sharing a story can do.
1. Relief
Pain is powerful, both mentally and physically. If we hold it in, mental pain can become physical and physical pain can become mental. That is more painful than the initial onset of hurt. Sometimes, we need to cry. Sometimes, we need to share. It’s okay to do it. I will admit that I don’t share what I need to all of the time. I will admit that I don’t always share my pain with people around me. Sometimes, I journal. Sometimes, I write poetry. Sometimes, I just sit and pray in my room or read my Daily Guideposts book which is full of stories. I know not everyone believes in a God, but, for me, my Heavenly Parent is the best being that I can turn to when I don’t have answers. Find someone that you can share your story with, too.
2. Powerful Communities
This one is perhaps my favorite. The amount of people I have learned to know better, even over the last few weeks, is incredible. When we share our stories, we find commonalities between ourselves and other human beings on this earth. There are only so many things that we have in common. Why not make it our goal to discover every single one of those things that we can? The more we share, the stronger communities we can build.
3. Better Knowledge & REAL News
Most people has heard about “fake news”. Fake news happens when people take the truth and make it into a lie, or when the truth is taken out of context to fit the desire of the writer. Many of us do this accidentally in our daily lives due to bias. Therefore, if we feel that our invisible disease is something that needs to be known about, we should spread what we know so that other people learn themselves. After all, we experience our feelings first hand. Only we can say what we feel like. Scientists have yet to invent technology that fully interprets emotions from our brain...or do they? [I guess I might have to research that.]
4. Personal Opinions & Courage
This one is one that I love. It’s important to understand ourselves and to know what we need and what we want. These are different. If we can stand up for what we need without being mean, and, if we can stand up for what we want without being too pushy, everyone can collaborate better. For example, I have used the term “invisible diseases” to describe Crohn’s and other illnesses that don’t show on the surface. Many others use “invisible illness”. I like the term disease better because disease have the opportunity to grow or fade. Illnesses seem stagnant to me. If a disease can grow, it can grow better or worse. It is up to how I interpret what it does.
Thank you for listening, and, if you have any stories you would like to share, please, let me know. You can always share them here, or I would love to help you start your own media-shared storybook. Your story is important.
I won’t share what people have told me unless they want their story to be know; but, I am writing today to advocate what sharing a story can do.
1. Relief
Pain is powerful, both mentally and physically. If we hold it in, mental pain can become physical and physical pain can become mental. That is more painful than the initial onset of hurt. Sometimes, we need to cry. Sometimes, we need to share. It’s okay to do it. I will admit that I don’t share what I need to all of the time. I will admit that I don’t always share my pain with people around me. Sometimes, I journal. Sometimes, I write poetry. Sometimes, I just sit and pray in my room or read my Daily Guideposts book which is full of stories. I know not everyone believes in a God, but, for me, my Heavenly Parent is the best being that I can turn to when I don’t have answers. Find someone that you can share your story with, too.
2. Powerful Communities
This one is perhaps my favorite. The amount of people I have learned to know better, even over the last few weeks, is incredible. When we share our stories, we find commonalities between ourselves and other human beings on this earth. There are only so many things that we have in common. Why not make it our goal to discover every single one of those things that we can? The more we share, the stronger communities we can build.
3. Better Knowledge & REAL News
Most people has heard about “fake news”. Fake news happens when people take the truth and make it into a lie, or when the truth is taken out of context to fit the desire of the writer. Many of us do this accidentally in our daily lives due to bias. Therefore, if we feel that our invisible disease is something that needs to be known about, we should spread what we know so that other people learn themselves. After all, we experience our feelings first hand. Only we can say what we feel like. Scientists have yet to invent technology that fully interprets emotions from our brain...or do they? [I guess I might have to research that.]
This one is one that I love. It’s important to understand ourselves and to know what we need and what we want. These are different. If we can stand up for what we need without being mean, and, if we can stand up for what we want without being too pushy, everyone can collaborate better. For example, I have used the term “invisible diseases” to describe Crohn’s and other illnesses that don’t show on the surface. Many others use “invisible illness”. I like the term disease better because disease have the opportunity to grow or fade. Illnesses seem stagnant to me. If a disease can grow, it can grow better or worse. It is up to how I interpret what it does.
Thank you for listening, and, if you have any stories you would like to share, please, let me know. You can always share them here, or I would love to help you start your own media-shared storybook. Your story is important.
Tuesday, February 20, 2018
Accompany Me
Today, I want to talk about two special someone’s in my life: My niece and my father.
My dad has more illnesses than are really medically sustainable in a human body. He has had testicular cancer and has one defective lung, half of a malfunctioning heart, sciatica, scoliosis, type one diabetes (that was diagnosed as type two for seven years), an overactive (which was once under-active) thyroid, asthma, and a few other various issues. His eyesight is so poor that he has thirteen different prisms in his glasses (last time I checked). And not a single one of those things has ever stopped this man from being incredible.
Now, when you look at my father...
...you probably don’t see the very sick, yet always determined man that I grew up with. My dad, just a few years ago, could have probably still outrun me at any distance. In fact, his body, from his years in the National Guard, never once seemed to deteriorate in my childhood. It is only recently that his list of invisible disease has become apparent, and he still, often, tries to push through whatever road blocks they give him. He always wants to “keep pushin’”.
So, what do you do when this happens—when your invisible disease rears its head to the surface?
Here are some tips that others use: https://familyshare.com/804/5-tips-for-coping-with-an-invisible-illness .
For my dad, his saving grace came by way of a child name Jordyn Grace. He began babysitting her right around the time that his health took a turn for the worst.
(DISCLAIMER: I have another niece that I love very, very much, too.)
For many people with diabetes, family becomes an important rock to ground oneself, too. With all of my siblings out of the house and my mother being the only one able to work a full-time job, Dad was left alone a lot of the day with nothing but his own interests and housekeeping to do.
Jordyn, now that she can speak, walk, and play games, helps him every day. She even knows when it is time to take his shot. She stands right beside him and says, “Push!”, because she knows Papa needs his medicine to stay alive. Whenever he gets frustrated, she pats him on the head or shoulder and says, “It’s okay, Papa.” Her presence really keeps my dad going some days. They are best buddies.
Invisible disease are hard. It’s even harder to face them when they decide to show thier ugly face. One thing many of us with Invisible Disease has learned is: When we feel alone and scared, it is never wrong to ask someone to accompany us.
If a little girl can do it, our best friends and family certainly can, too.
My dad has more illnesses than are really medically sustainable in a human body. He has had testicular cancer and has one defective lung, half of a malfunctioning heart, sciatica, scoliosis, type one diabetes (that was diagnosed as type two for seven years), an overactive (which was once under-active) thyroid, asthma, and a few other various issues. His eyesight is so poor that he has thirteen different prisms in his glasses (last time I checked). And not a single one of those things has ever stopped this man from being incredible.
Now, when you look at my father...
...you probably don’t see the very sick, yet always determined man that I grew up with. My dad, just a few years ago, could have probably still outrun me at any distance. In fact, his body, from his years in the National Guard, never once seemed to deteriorate in my childhood. It is only recently that his list of invisible disease has become apparent, and he still, often, tries to push through whatever road blocks they give him. He always wants to “keep pushin’”.
So, what do you do when this happens—when your invisible disease rears its head to the surface?
Here are some tips that others use: https://familyshare.com/804/5-tips-for-coping-with-an-invisible-illness .
For my dad, his saving grace came by way of a child name Jordyn Grace. He began babysitting her right around the time that his health took a turn for the worst.
(DISCLAIMER: I have another niece that I love very, very much, too.)
For many people with diabetes, family becomes an important rock to ground oneself, too. With all of my siblings out of the house and my mother being the only one able to work a full-time job, Dad was left alone a lot of the day with nothing but his own interests and housekeeping to do.
Jordyn, now that she can speak, walk, and play games, helps him every day. She even knows when it is time to take his shot. She stands right beside him and says, “Push!”, because she knows Papa needs his medicine to stay alive. Whenever he gets frustrated, she pats him on the head or shoulder and says, “It’s okay, Papa.” Her presence really keeps my dad going some days. They are best buddies.
Invisible disease are hard. It’s even harder to face them when they decide to show thier ugly face. One thing many of us with Invisible Disease has learned is: When we feel alone and scared, it is never wrong to ask someone to accompany us.
If a little girl can do it, our best friends and family certainly can, too.
Thursday, February 15, 2018
A Valentine on Crohn’s Day
Every once in a while, I want to post what it is like to live with Crohn’s disease. I want to eliminate the stigma that we are always in the bathroom, every single day.
For me, today has been an okay Crohn’s day.
I woke up early to do some homework and call in for medication. I feel like that is pretty normal for a lot of college students today. (Right now, with the Imuran that I am taking, I have to take it with my Humira shot, or Humira could become ineffective faster. Imuran is a type of low-dose chemo and typically used for arthritis: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Azathioprine-Imuran)
You see, energy is one of the hardest things for all humans to find. When you have Crohn’s disease, you are often malnourished or weak because your body doesn’t always like to absorb nutrients the way it should. Therefore, I didn’t get out of bed when I “woke up”. I snoozed my alarm for nearly an hour. This has become almost a habit for me. I can usually break it for a few days, and then I will go right back to exhaustion.
After finally getting out of bed, I did call my campus Health Center for meds, and I did do a little bit of homework. My stomach, as usual did not like mornings, so, like usual, about half an hour of my morning was spent with me being queasy near the restroom. I have to plan for this when I set my alarm.
At ten, I proceeded to my Senate Office hours to type the minutes from the college’s President’s visit to Senate last night and to send other notifications to campus. In my hands, I held trail mix and a bagel...in a bowl...which I was told repeatedly was very odd. I needed the bagel and trail mix because they are about the only things that my body will digest in the morning, other than fruit.
At 12:30, I finally received the phone that I had been waiting nearly a month and a half to get! I wouldn’t mention this except for the fact that it took a lot of stress off of me, which helped my Crohn’s calm down.
After a turkey burger with pepper jack cheese (It wasn’t spicy, oddly enough, so I was okay), I proceeded onto my Costume Shop job. There, I spent an hour remodeling wigs and rearranging hair styles for the upcoming theatre show. This was calming and nice. I love it there so much.
When all of that was finished, my only class of the day loomed ahead. Indepenedent Study. Art.
Today was critique day, so we would all show our projects off to each other. I was first, and as I was rambling about my project, I realized how often I use intestines or the idea of momentary pain as a part of my artwork. Huh. I guess Crohn’s really does influence every bit of my psyche.
Class finished, and I ran outside through the rain to my dorm. My boyfriend and I had won a Valentine’s dinner, so we were really excited to go.
It was the most amazing food I have ever had. There was this great salad, crab cakes, lobster tail, filet minion, AND creme brûlée!
My boyfriend couldn’t finish his dessert, so (silly me), I decided that I would eat the rest of his dairy-based heavenly treat. After eating a lot of fish. And butter. And cheese.
I’m always super hungry or super not hungry, and this sometimes makes me ignore what makes my stomach upset, especially when I am super hungry.
Afterwards, we barely could walk up the hill...but WE DID! After getting back to my room, I had one of the worst stomach-aches of my life because my Crohn’s thought I was the stupidest human being it had ever met.
That night, I took a three hour nap, and then still slept nine hours. After a nap, I was back to normal.
Even with some ups and downs, I still love my body and I still love spending time with those I care about, even when I’m sick.
For me, today has been an okay Crohn’s day.
I woke up early to do some homework and call in for medication. I feel like that is pretty normal for a lot of college students today. (Right now, with the Imuran that I am taking, I have to take it with my Humira shot, or Humira could become ineffective faster. Imuran is a type of low-dose chemo and typically used for arthritis: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Azathioprine-Imuran)
You see, energy is one of the hardest things for all humans to find. When you have Crohn’s disease, you are often malnourished or weak because your body doesn’t always like to absorb nutrients the way it should. Therefore, I didn’t get out of bed when I “woke up”. I snoozed my alarm for nearly an hour. This has become almost a habit for me. I can usually break it for a few days, and then I will go right back to exhaustion.
After finally getting out of bed, I did call my campus Health Center for meds, and I did do a little bit of homework. My stomach, as usual did not like mornings, so, like usual, about half an hour of my morning was spent with me being queasy near the restroom. I have to plan for this when I set my alarm.
At ten, I proceeded to my Senate Office hours to type the minutes from the college’s President’s visit to Senate last night and to send other notifications to campus. In my hands, I held trail mix and a bagel...in a bowl...which I was told repeatedly was very odd. I needed the bagel and trail mix because they are about the only things that my body will digest in the morning, other than fruit.
At 12:30, I finally received the phone that I had been waiting nearly a month and a half to get! I wouldn’t mention this except for the fact that it took a lot of stress off of me, which helped my Crohn’s calm down.
After a turkey burger with pepper jack cheese (It wasn’t spicy, oddly enough, so I was okay), I proceeded onto my Costume Shop job. There, I spent an hour remodeling wigs and rearranging hair styles for the upcoming theatre show. This was calming and nice. I love it there so much.
When all of that was finished, my only class of the day loomed ahead. Indepenedent Study. Art.
Today was critique day, so we would all show our projects off to each other. I was first, and as I was rambling about my project, I realized how often I use intestines or the idea of momentary pain as a part of my artwork. Huh. I guess Crohn’s really does influence every bit of my psyche.
Class finished, and I ran outside through the rain to my dorm. My boyfriend and I had won a Valentine’s dinner, so we were really excited to go.
It was the most amazing food I have ever had. There was this great salad, crab cakes, lobster tail, filet minion, AND creme brûlée!
My boyfriend couldn’t finish his dessert, so (silly me), I decided that I would eat the rest of his dairy-based heavenly treat. After eating a lot of fish. And butter. And cheese.
I’m always super hungry or super not hungry, and this sometimes makes me ignore what makes my stomach upset, especially when I am super hungry.
Afterwards, we barely could walk up the hill...but WE DID! After getting back to my room, I had one of the worst stomach-aches of my life because my Crohn’s thought I was the stupidest human being it had ever met.
That night, I took a three hour nap, and then still slept nine hours. After a nap, I was back to normal.
Even with some ups and downs, I still love my body and I still love spending time with those I care about, even when I’m sick.
Tuesday, February 13, 2018
Unapologetic Friendship
Today, I want to talk about what it is like to meet someone else with an autoimmune disease—or to meet someone who is sick and doesn’t know what they have.
I can liken this feeling to meeting another dog owner. You suddenly want to play together, talk about the food your dog eats, show off what you can do with your dog, and share experiences.
Instead of the dog doing the actions, you want it to be you.
If you meet someone else with an autoimmune disease, the first ten minutes (at least) of your chance encounter may include a story about how you learned that you had something invisible within you. It may include all of the things you have done anyway to overcome your disease. It may include what you are doing right now to stay healthy. It will become a very friendly interview that centers around this disease that only so many people share.
In any case, you will talk about yourself and, vicariously, be involved in the other person’s life.
This is great! It’s what humans do. You make a friend, and you will know something else about the thing that haunts you (potentially...if it is the same disease).
However, there is this other, much more annoying side of you. For me, it comes in the way of pushing my disease onto others.
I have a friend who has a chronic stomach ache = You much have Crohn’s or Siliac. Let’s go check it out.
My friend has been pale and not feeling well for a long time = I ask a long list of questions that will ultimately lead me to saying: “Ah, you might have Crohn’s Disease.”
But, Crohn’s is different for everyone. My sick friends may not even have Crohn’s. Honestly, it is usually a long-lasting cold. This link is a good tip for being friends with people with Crohn’s Disease. It is also good for me because it reminds me that there is a lot more to the disease than I remember: https://www.theodysseyonline.com/friend-crohns-disease
In the end, I have turned myself into a mini, not-so-well-educated, doctor. Whether that is because I don’t want to feel alone or whether it is because I waited too long to get diagnosed, I don’t fully know. However, it leads to lots of fun conversations that I wouldn’t trade away. Even if my friends aren’t chronically sick, I can be there to say that it is going to be okay. I can also be the one to encourage them to go to the hospital because I am living proof that medication can make you feel better...and, you know, alive.
I may not always meet others who have Crohn’s, but I am so thankful for those chance encounters when I do and when we are both strong enough to admit that we are pushing through our invisible disease. I am un-apologetically ill, and I love the people I meet because of it.
I can liken this feeling to meeting another dog owner. You suddenly want to play together, talk about the food your dog eats, show off what you can do with your dog, and share experiences.
Instead of the dog doing the actions, you want it to be you.
If you meet someone else with an autoimmune disease, the first ten minutes (at least) of your chance encounter may include a story about how you learned that you had something invisible within you. It may include all of the things you have done anyway to overcome your disease. It may include what you are doing right now to stay healthy. It will become a very friendly interview that centers around this disease that only so many people share.
In any case, you will talk about yourself and, vicariously, be involved in the other person’s life.
This is great! It’s what humans do. You make a friend, and you will know something else about the thing that haunts you (potentially...if it is the same disease).
However, there is this other, much more annoying side of you. For me, it comes in the way of pushing my disease onto others.
I have a friend who has a chronic stomach ache = You much have Crohn’s or Siliac. Let’s go check it out.
My friend has been pale and not feeling well for a long time = I ask a long list of questions that will ultimately lead me to saying: “Ah, you might have Crohn’s Disease.”
But, Crohn’s is different for everyone. My sick friends may not even have Crohn’s. Honestly, it is usually a long-lasting cold. This link is a good tip for being friends with people with Crohn’s Disease. It is also good for me because it reminds me that there is a lot more to the disease than I remember: https://www.theodysseyonline.com/friend-crohns-disease
In the end, I have turned myself into a mini, not-so-well-educated, doctor. Whether that is because I don’t want to feel alone or whether it is because I waited too long to get diagnosed, I don’t fully know. However, it leads to lots of fun conversations that I wouldn’t trade away. Even if my friends aren’t chronically sick, I can be there to say that it is going to be okay. I can also be the one to encourage them to go to the hospital because I am living proof that medication can make you feel better...and, you know, alive.
I may not always meet others who have Crohn’s, but I am so thankful for those chance encounters when I do and when we are both strong enough to admit that we are pushing through our invisible disease. I am un-apologetically ill, and I love the people I meet because of it.
Thursday, February 8, 2018
Friend-Ship
Friendship is like a boat: you have to steer it right and avoid icebergs unless you are near port.
So, what is it like to have friends when you are living with invisible diseases? One might think it wouldn’t be much different. This is somewhat true. However, people who suffer internally can’t always communicate to the outside world what is wrong. The same goes for depression. You cannot force anyone to speak about what is wrong.
In fact, on my sister’s wedding (the picture seen below), I was having a minor flare. Some days, you just have to suck it up and keep going...because every day is kind of intense. I didn’t look upset. I “seemed fine”.
So, what is it like to have friends when you are living with invisible diseases? One might think it wouldn’t be much different. This is somewhat true. However, people who suffer internally can’t always communicate to the outside world what is wrong. The same goes for depression. You cannot force anyone to speak about what is wrong.
In fact, on my sister’s wedding (the picture seen below), I was having a minor flare. Some days, you just have to suck it up and keep going...because every day is kind of intense. I didn’t look upset. I “seemed fine”.
But, that is just how invisible disease’s work. Some days, you are fine, and others, you feel like ripping your stomach out...or your mind...or your feelings. It just depends on what you have.
My friends sometimes think I am just moody. Sometimes, they just think I don’t want to hang out with them. I feel awful that thier presence is not what turns me away. It is something internal that I can only attempt to control.
So, if you ever have a friend who has IBS or Crohn’s or Colitis, be careful with what you say to them. You don’t want to turn your friendship into the titanic. Here are some pretty funny tips about how to avoid saying the wrong things, specifically with Crohn’s: https://www.cbsnews.com/pictures/11-things-not-to-say-to-people-with-crohns-or-colitis/ . However, when it comes to other invisible ailments, it never hurts to stop before you speak.
In the end, I don’t want to tell my friends how I feel all the time. It sucks: I’ll be honest. BUT, the more I learn to handle the pain within myself and care for the people around me when I can, the more I can learn to take care of the invisible disease I suffer from. And, the more I can learn to speak up about how much it hurts. I won’t let my friendships sink because of something only I can see.
Tuesday, February 6, 2018
Mealtime Spiel-Time
A Dining Hall.
Sounds pretty glorious, right? Especially when you are a busy college student with little access to the 30-minute away Walmart that would otherwise provide your sustenance. Plus, they celebrate diversity with some great international foods whenever they can!
However, when you’re living with Crohn’s at college, or any digestive-tract disease, having meals made for you can mean queasiness among other discomforts. Although our Hiram Dining Hall makes enormous amounts of effort to fulfill dietary needs, there is still only one choice on campus. This means that we have about three options for lunch and supper (plus make-your-own options like the salad bar or lunch meat station) and then typical breakfast foods for breakfast. However, living with Crohn’s can mean that dairy, certain sugars, and sausage skins all can make you sick if taken in too much. Spicy foods also often don’t agree with me. Here is a guide to common diet issues and suggestions for those with Crohn’s: http://www.ebnutrition.com/?pID=35 .
After those foods are subtracted, there is typically one or two options around the hall and then the salad and sandwich bars. This doesn’t seem to bad, but if I am being picky, like any college student, I probably won’t like one or two of the options accroding to my own pallet. This leaves me with one or no options. Breakfast often leaves me with fruit or bread with jam. Yay.
This is not the fault of the Dining Hall. They would make me food, should I ask. However, this just provides some larger hurdles that I have to jump over, especially if I am late to class or another meeting.
I know I have mentioned before that Crohn’s makes one malnourished. If one does not eat every few hours, one will become increasingly hungry, and painfully hungry after a few more hours. Most of the time, one will even grow faint quickly. Now, with a Dining Hall, there are typically certain hours that the hall is open. Therefore, stocking up on food for your dorm room is a MUST.
My point here is: If you want to live on Campus with any kind of digestive disease, it is wise to have a wonderful relationship with your cooking staff and, if you can, make your own food. If you can find a school with multiple options, that is also helpful. Here at Hiram, we have a Bistro that we get some money towards out of our meal plan. That place has helped me on multiple occasions.
Sounds pretty glorious, right? Especially when you are a busy college student with little access to the 30-minute away Walmart that would otherwise provide your sustenance. Plus, they celebrate diversity with some great international foods whenever they can!
However, when you’re living with Crohn’s at college, or any digestive-tract disease, having meals made for you can mean queasiness among other discomforts. Although our Hiram Dining Hall makes enormous amounts of effort to fulfill dietary needs, there is still only one choice on campus. This means that we have about three options for lunch and supper (plus make-your-own options like the salad bar or lunch meat station) and then typical breakfast foods for breakfast. However, living with Crohn’s can mean that dairy, certain sugars, and sausage skins all can make you sick if taken in too much. Spicy foods also often don’t agree with me. Here is a guide to common diet issues and suggestions for those with Crohn’s: http://www.ebnutrition.com/?pID=35 .
After those foods are subtracted, there is typically one or two options around the hall and then the salad and sandwich bars. This doesn’t seem to bad, but if I am being picky, like any college student, I probably won’t like one or two of the options accroding to my own pallet. This leaves me with one or no options. Breakfast often leaves me with fruit or bread with jam. Yay.
This is not the fault of the Dining Hall. They would make me food, should I ask. However, this just provides some larger hurdles that I have to jump over, especially if I am late to class or another meeting.
I know I have mentioned before that Crohn’s makes one malnourished. If one does not eat every few hours, one will become increasingly hungry, and painfully hungry after a few more hours. Most of the time, one will even grow faint quickly. Now, with a Dining Hall, there are typically certain hours that the hall is open. Therefore, stocking up on food for your dorm room is a MUST.
My point here is: If you want to live on Campus with any kind of digestive disease, it is wise to have a wonderful relationship with your cooking staff and, if you can, make your own food. If you can find a school with multiple options, that is also helpful. Here at Hiram, we have a Bistro that we get some money towards out of our meal plan. That place has helped me on multiple occasions.
Thursday, February 1, 2018
Bowelhemian Relapsody
As many people with chronic diseases know, sometimes you have to ask yourself, “Is this the real life, or is this just fantasy?” (Bohemian Rhapsody by Queen).
I have learned, however, that everyone, in thier life, is probably going to experience something chronic. Now, whether this is physical, mental, spiritual, or abstract will be different from person to person. Perhaps a person will experience it all. However, this is the real life, and these challenges that Invisible Diseases present us with are blessings, too.
Many people find out they have Crohn’s when they are in thier young adult years. Few are diagnosed in thier middle school years, and even fewer in elementary school (https://www.crohnsandcolitis.com/crohns). If you click on this previous link, you will find out that most people experience symptoms that are mild to severe, and 67% of people who have been in remission will have a relapse in the next 5 years.
For me, relapse was one of the most terrifying times of my life. For 700,000 others in the United States, it is a terrifying time that they will all most likely experience. That’s how many others have Crohn’s within the U.S. alone.
When I was a First-year in college, I stretched myself too thin doing too much in too little time. What I didn’t realize is, when you get stressed with an autoimmune disease, your body gets very angry with you.
At that time, I had been taking a medication called Remiade intravenously (through IV) every two months since seventh grade. I had been warned, when I first was diagnosed, that patients can become allergic/immune to the medications that keep them alive.
The moment you find out you can’t take a medicine anymore is terrifying. I am lucky because I have the most common type of Crohn’s Disease. Therefore, there are at least a few more options for me. However, once you run out, you run out—so that is a little scary.
My first clue to Remicade immunity was a flare up. What that means is: I was in severe stomach pain for a few days, thinking I had food poisoning. By the time I got to the hospital, my intestine had swelled up, closing the opening in it. After five hours of ineffective morphine (I should have said 10 instead of 8 on the pain scale, I guess), they gave me some steroids and sent me home. For the rest of my life, this scar tissue will be more prone to tears, flare-ups, and infection. I still have pain there every once in a while.
Two treatments after that, I started having trouble breathing and talking. I barely noticed because I was sleepy, as I took Benadryl before every treamtent to ensure that allergic reactions didn’t happen. Thankfully, my best friend noticed and called over a nurse to give me some steroids.
After that, I spent the summer in a limbo with no medical insurance (my mom lost her job), two teeth that needed root canals (Crohn’s malnourishes you AND you teeth), and no medication.
Finally, I was put on Humira with Imuran as a little helper. The Humira website can be found here: (https://www.humirapro.com/dermatology?cid=ppc_ppd_humiraderm_hcp_ggl_brnd_6435).
This new medication terrified me because I would have to give myself a shot every two weeks. Thankfully, my dad has diabetes, so he helped me find the courage to do so. We also have some amazing and supportive nurses at Hiram College who helped teach me to inject myself.
In the end, this is my real life. It is terrifying, but I also know that I am blessed to be where I am, and I am blessed to be able to have treatments that keep me alive.
I have learned, however, that everyone, in thier life, is probably going to experience something chronic. Now, whether this is physical, mental, spiritual, or abstract will be different from person to person. Perhaps a person will experience it all. However, this is the real life, and these challenges that Invisible Diseases present us with are blessings, too.
Many people find out they have Crohn’s when they are in thier young adult years. Few are diagnosed in thier middle school years, and even fewer in elementary school (https://www.crohnsandcolitis.com/crohns). If you click on this previous link, you will find out that most people experience symptoms that are mild to severe, and 67% of people who have been in remission will have a relapse in the next 5 years.
For me, relapse was one of the most terrifying times of my life. For 700,000 others in the United States, it is a terrifying time that they will all most likely experience. That’s how many others have Crohn’s within the U.S. alone.
When I was a First-year in college, I stretched myself too thin doing too much in too little time. What I didn’t realize is, when you get stressed with an autoimmune disease, your body gets very angry with you.
At that time, I had been taking a medication called Remiade intravenously (through IV) every two months since seventh grade. I had been warned, when I first was diagnosed, that patients can become allergic/immune to the medications that keep them alive.
The moment you find out you can’t take a medicine anymore is terrifying. I am lucky because I have the most common type of Crohn’s Disease. Therefore, there are at least a few more options for me. However, once you run out, you run out—so that is a little scary.
My first clue to Remicade immunity was a flare up. What that means is: I was in severe stomach pain for a few days, thinking I had food poisoning. By the time I got to the hospital, my intestine had swelled up, closing the opening in it. After five hours of ineffective morphine (I should have said 10 instead of 8 on the pain scale, I guess), they gave me some steroids and sent me home. For the rest of my life, this scar tissue will be more prone to tears, flare-ups, and infection. I still have pain there every once in a while.
Two treatments after that, I started having trouble breathing and talking. I barely noticed because I was sleepy, as I took Benadryl before every treamtent to ensure that allergic reactions didn’t happen. Thankfully, my best friend noticed and called over a nurse to give me some steroids.
After that, I spent the summer in a limbo with no medical insurance (my mom lost her job), two teeth that needed root canals (Crohn’s malnourishes you AND you teeth), and no medication.
Finally, I was put on Humira with Imuran as a little helper. The Humira website can be found here: (https://www.humirapro.com/dermatology?cid=ppc_ppd_humiraderm_hcp_ggl_brnd_6435).
This new medication terrified me because I would have to give myself a shot every two weeks. Thankfully, my dad has diabetes, so he helped me find the courage to do so. We also have some amazing and supportive nurses at Hiram College who helped teach me to inject myself.
In the end, this is my real life. It is terrifying, but I also know that I am blessed to be where I am, and I am blessed to be able to have treatments that keep me alive.
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