How are you disabled?
Someone asked me the other day, "not to be offensive, but how you are considered disabled, I mean I get why someone in a wheelchair is disabled, but I don't see you as disabled...?" 
I understand where her question comes from; however, I also believe she is mistaken in her definition of disabled. So I decided to challenge her.  I responded "Although my condition is not visible, I would argue that it is as much of a disability as being in a wheel chair..."  

She wasn't buying it, so I elaborated.

My Answer:
Would you consider a person who has to spend the rest of their life in a wheel chair, disabled? 

Would you consider someone with a learning disability, disabled? 

What do both of these types of people have in common? Well, on a basic level, they both have medical issues, that present them with challenges. These challenges can be overcome in a variety of ways, but at the end of the day these medical issues make their life harder. In my own words, that is the definition of a medical disability.

Well, given this explanation of disability. My Crohns Disease, is a medical condition that makes my life incredibly difficult.  On their own, my symptoms, my pain, nausea, fatigue, etc can be debilitating symptoms, but when combined, they can be unbearable. Each day, I am presented with challenges and each day I must overcome these challenges in order to reach my goals. 

This is why I am disabled. But, I do not believe that disabilities have to hold people back, it just means we have to get creative in how we overcome the challenges presented.  

"Labeled Disabled, yet still I am ABLE"

On April 1st, I am throwing a fundraiser here on Hanover's campus.  Not only is the goal to raise money for the Crohns and Colitis Foundation, but it is also "Redefine DisABILITY."  

I want to show Hanover's campus that being disabled, does not mean I am damaged, or incapable, or any less of a person.  I would argue the opposite. Being disabled has made me strong, confident and determine. I am proud of what I have accomplished, despite, my disability.   

My Request:
I have never asked for money on my blog before, but i've learned that if you don't ask, you often don't receive.  Therefore, please take a moment to review my fundraiser page and consider making a donation to the Crohns and Colitis Foundation.


Because although I am disabled, I choose to be defined by my abilities, not my inability, in my not so normal life.

Ever heard of a catch 22? Well according to Urbandictionary.com, a catch 22 is 

"Also known as a vicious cycle - two or more conditions require the other conditions to be fulfilled, but these other conditions also require the original condition to be fulfilled."

This is a very literal definition of a catch 22, but in a more general sense, my Crohns disease is filled with numerous Catch 22's were a symptoms requires a medicine and the medicine causes a side-effect that impacts the symptom or medicine or both.  It's vicious cycle that goes round and round.

For example, the inflammation in my body has caused my heart rate to significantly increase, tachycardia.  The medication I use to lower my heart rate, blocks adrenaline secretion (Beta-Blocker).  When you block your adrenaline, you often feel sluggish and extremely tired.  So when you add this additional tiredness to my chronic fatigue from my Crohns Disease, I spend most of my days totally exhausted!  

What do people do when they are tired and need energy?  They drink caffeine.  Guess what caffeine does!? It raises your heart rate.  So I take medication to lower my heart rate, which makes me tired, and if I drink caffeine to combat that tiredness, it can raise my heart rate. It gets complicated!

Another one of my favorite examples is pain and IBD.  When I have pain with my Crohns, it typically means something is stuck in my digestive track due to inflammation and scar tissue. Tylenol and other non-narcautic pain meds don’t help my pain, so If i really need relief, I would have to take vicodin or another opioid.

Well fun fact, opioids slow down your digestive track.  If I take pain medication to help with the pain of being obstructed, chances are that it is going to make the obstruction worse due to decreased mobility.  So then how do you combat the pain of an obstruction without making the obstruction worse?  For me, you often just live with it.

Also with my Crohns, I have developed migraines and trouble concentrating.  Well, the medication my doctor prescribed for the headaches can cause tachycardia, increased heart rate. 

If you remember, I already have trouble with that.  So then you ask, would you rather have a migraine or a fast heart rate?  If the migraine gets too bad, do you take your rescue therapy, codeine? which could cause an obstruction, or do you just endure the pain?  If you take codeine, then it's going to also make you sleepy.  So do you drink caffeine to stay awake, which might increase your heart rate? Or do you  just endure being tired?  See what I mean about complicated?

On TPN I am not supposed to be eating anything.  However, one of the treatments for my Crohns is 20 mg of prednisone daily. One of the prominent side-effects of prednisone is increased appetite.So while I am not supposed to be eating, I am taking a medication that increases my appetite.  
This makes an already nearly impossible task of not eating, even more difficult.  Once again, I’m left with a catch 22.

It leaves me wondering, does it ever end?  Will there ever be an answer to these problems that doesn’t cause more problems, or is that just the nature of medicine.  The perceived benefit of taking the medication outweighs the negative side effects.  I don’t know the answer to these questions, but right now it feels like the medication being used to put out one fire is causing another fire. The end result is that I experience an overwhelming number of "catch 22 fires" in my not so normal life.

Dehydration is just the worst:  I personally have been there too many times to count and can easily tell if I'm dehydrated.  I recently was given the opportunity to try an Oral Rehydration Solution (ORS) called DripDrop and believe that this product may help prevent future trips to the ER and quite possibly be a magical cure for hangovers on college campuses everywhere.

But in all reality, most people have been dehydrated at one point or another from working out, being sick or drinking too much.  Dehydration often presents itself with a headache, decreased and concentrated urine, dizziness, and an overall feeling of being unwell.  Those are just the outward signs of dehydration, because internally it can reek havoc.

There are two things you probably don't know about dehydration: 
1) Water alone is probably not going to fix your dehydration 2) In extreme circumstances, the imbalance of electrolytes in your body can cause your body to shut down.

At this point you might be beginning to realize how serious of an issue dehydration can become when your body isn't maintaining a balance of electrolytes.  For those of us with chronic illnesses, dehydration can become a constant battle that we often lose. Before being introduced to DripDrop, I had not found an effective treatment for dehydration, other than a midweek trip to the ER for fluids.  

My Struggle with Dehydration: See when I had my ostomy, I was putting out so much fluid from my ostomy that I physically could not stay hydrated for 24 hours. No matter how much water, gatorade and other fluids I drank, it wasn't balanced correctly, so I continued to get dehydrated.  

We tried to make our own Oral Rehydration Solution, but that stuff tastes nasty and I couldn't palate the solution.  So I needed up having to do IV fluids every night in my dorm room to avoid almost daily trips to the ER.  Needless to say, IV fluids in a dorm room aren't exactly indicative of a "ballin" college social life.  I would have done anything for a way to rehydrate orally.

Problem Solved by DripDrop: Do you see how dehydration can be a huge problem?  Well, thankfully, a product called DripDrop helps this problem of dehydration.  

After using this product for several weeks from the free trials sent to me by DripDrop, I found DripDrop to be highly effective as an ORS.  Even though, dehydration is not sending me to the ER, I still have tachycardia (fast heart beat) that can be aggravated by an imbalance of electrolytes.  
DripDrop did not eliminate my tachycardia, but it did help me rebalance my electrolytes when my heart rate was resting at 120.  In fact, when my heart rate is bothering me, the first thing I do is reach for a packet of DripDrop in order to ensure that I'm properly hydrated.  I've learned that consuming the ORS gives me peace of mind that my electrolytes are balanced and not causing my tachycardia.

BIG PLUS, it tastes great:  Although there is still a tinge of medical taste, it overall tastes great! In fact, the other day I gave a packet to my very hungover friend and she thought it tasted like lemonade!  She also called it her "magical hangover cure." I think she makes a valid point to be honest!
Tasting great AND being an ORS is a big accomplishment, because there are very few flavored ORSs available and all other ones I have tried, have tasted terrible.  

For the mothers out there: The product has no artificial colors, flavors or preservatives and is used by leading doctors and pediatricians to treat dehydration.  In basic terms, the product supplies the right amounts and ratios of sodium, sugar and water to efficiently replace your bodies fluids and electrolytes.  

I know this was kind of a long post, but I wanted to show you a problem I have struggled with, dehydration, and the solution that was provided to me, DripDrop.  I honestly wish I had used DripDrop when I had my ostomy (which is now reversed) because I probably could have avoided a lot of ER trips. I truly recommend this product to everyone and think it can help prevent and treat dehydration, no matter what the cause.  Because of all the surgeries I have had, staying hydrated may always be an issue for me, meaning DripDrop will forever be a part of my not so normal life.

True, I have fought so hard. But what happens when you don't love who you are? And I don't mean loving yourself in the physical sense. Just like most other women, I have certain insecurities and there's things that I don't love about my body. But thats not what I'm talking about...
 
What I'm talking about, is the fact that I literally hate how my body works. I hate me on the inside: I hate how I can't eat, I hate how I can't sleep, and I hate how I'm always tired.  There are so many things about my body that I hate and no matter what I do, these things don't go away.

The real question for me is how am I supposed to let someone else love me or even love someone else when there so much about myself that I absolutely hate?  These things that I hate, are things I can't fix and that no one else can fix for me.  At my most simple form, I'm complicated and at my most complicated form, I'm a complete mess.  In my life, nothing is simple, except the fact that everything is simply not okay.

Sound poetic? Sound tragic? Well my life is not poetic... It's not tragic, it's just mine.  My complicated, messy, not very lovable life.  And by not very lovable, I  mean if I can't love it, why should I expect anyone else to love it? I am blessed with a number of amazing friends, who love me despite my illness.  And for those individuals, I am unbelievably thankful, because beyond all reason, they have chosen to love me despite the crap shoot that is my life. 

But in a romantic sense, who could possibly love me? It's a question that has continued to plague me as I grow older and watch those around me find love. 

This question is only perpetuated by the iconic holiday, called Valentine's Day, aimed at celebrating the love in one's life. Maybe I'm alone in hating my body for the illness that plagues it, or maybe I'm not?  I don't actually know since nobody talks about their hate for their body.  And if they do, it's in a self-pitying other-condemning sort of way.  Society tells me because I have a good body and a pretty face, I am beautiful and therefore lovable. But society doesn't see my illness.  It doesn't see the part of me that make me 'unlovable', which is the part of myself that I have not been able to reconcile in my not so normal life.

Most parents of an ill child feel the helplessness and vulnerability of not being able to make their child well.   Sometimes we grab on to anything that helps us feel more in control.  For me,  I became super protective about germs.  I began to see germs everywhere, enemies of the precarious balance of my daughter’s health. I visually scoured every public restroom for signs of cleanliness (or lack of).  I have also been known, on occasion and much to my families chagrin, to force us to depart from a restaurant before ordering- due to telltale signs of poor hygiene and health standards. After experiencing panic attacks and some other fun side effects of anxiety I came back to a better balance.

I still think hand washing is important, and certainly not everyone keeps a stash of hand wipes in their car, but I have learned that Sarah has survived pretty well despite the many germs she has been exposed to.  Perhaps she has become less cautious in reaction to my paranoia?  I don’t really know.   What I do know is that I cannot let myself think about the numerous public toilet seats she actually sits on!  I  offered to purchase purse size toilet seat covers and she acted MORTIFIED.  So, I don’t think about it. 

 The truth is, I cannot protect her from every germ and danger that presents itself.   I cannot make her illness go away.  What I CAN do is to be there when she needs me in her Not SO Normal Life.

If there was one thing that I wished people understood about Crohns Disease, it's that just because I do not look or act sick, DOES NOT mean I am not sick.  I could very easily look sick every day and complain every time I do not feel well, but what would that accomplish?  Plus, not feeling well is an almost constant state.  I joke that I am nauseous 95% of the time, but the sad thing is, I'm not joking.

Almost all day, Every day, I am experiencing symptoms from my Crohns Disease: Nausea, fatigue, headaches, pain, cramping and heartburn.  It is tiring, it is hard, and it is constant, but it is also a normal part of my life.  This means that there is literally zero point in sharing this information with those around me all the time.  In fact, I take great pride in not acting or appearing sick.  However, the catch 22 is that people often under estimate the severity of Crohns disease because we don't look sick!

We tend to be a society that focuses on appearances.  Stereotypes are assigned and assumptions are made, solely based on how someone looks.  Have you ever had something going on in your life that you didn't want to talk about or didn't want other people to know about?  You hid it, right? And people around you have no idea that it is going on, but that does not mean that it sucks any less or that it isn't happening.  

It is actually Ironic how deceiving looks can be. When it comes to other things in life we all know that we can't judge them just based on appearances.  To try to make my point, I'm gonna compare myself to a car and not just any car, I'm a Aston Martin Vanquish.  So maybe I had to do some googling to find an expensive car that I wanted to be compared to, but it really is a beautiful car!  

So you wouldn't buy this car just because it looks nice, you would check out how the car runs and make sure all the internal pieces are functioning properly.  No matter how nice it looks, if it doesn't run correctly, then it's not something you want to purchase.

This is where the analogy falls apart since I'm not for sale.  But the point I was attempting to make, is that we don't judge other things in our life based on appearances, so why do we judge each other based on appearances?  I am rarely going to look sick and I rarely ever complain, but that doesn't mean you should undermine my illness by telling me I'm exaggerating or faking...

Because trust me when is say, I am never faking my symptoms or my disease in my not so normal life.

Yesterday I had my last first day of college.  While the day was a tad bitter-sweet, I couldn't help but be amazed that I've made it this far. 

It is crazy everything I have been through in college.  To be honest I think there are four things that have gotten me this far.  When I think about it, they are like four innertubes keeping me afloat in the choppy waters of my life with Crohns.

First of all, my faith in God's plan for my life is directly responsible for my success in college.  When I feel like everything in my life is crumbling and from my point of view my world is falling apart, sometimes the only thing that gets me up in the morning is the belief that God has a plan for my life, illness and all.  
To some this may seem ironic given my situation and to others it may seem naive, but for me everything I do would be truly meaningless if there was not a God who had a plan that was bigger than my own.

Second, my family, friends, sorority (shoutout to all my Chi O sisters), teachers and my really not very nice dog (Lucy), have made all the difference in the world in being able to stay in school.   I think my doctors have given up trying to tell me not to go back to school.  
Instead they ask me, "still crushing it at school?" okay maybe they don't use 'crushing it' but sometimes that is how I like to hear it in my head!  But seriously, everyone in my life has helped make any success I have had possible and I am so grateful to have them in my life.

Thirdly, I'm actually not sure that is a word, so feel free to correct me if it isn't, but I digress, because my third things is a little different.  Oddly enough, I am grateful for my TPN, IV nutrition.  Although not eating is extremely difficult, I'm not sure I would be functioning without it.  
I remember the first time my mom ever brought up supplemental nutrition.  She said she thought we should look into doing an Nasogastric tube and do night feedings.  I thought she was crazy!  In fact I went and told my friends that my mom had lost it!  No way was I going to give up eating AND do a feeding tube at night in order to achieve bowel rest.
Ironically, for over a year now, I have not been eating AND had a portacath surgically implanted AND access my port with a needle several times a week.  Isn't it funny how much can change depending on circumstances?  And now I am thankful for the IV nutrition because it has allowed me to enjoy a better quality of life.

Lastly, and I'm actually serious about this one, but dancing makes my top list!    So my friends can tell you, I love to dance.  I may not have much stamina, but dancing is a huge stress reliever for me and it is something I enjoy doing that makes me feel normal.  Sometimes I am dancing at parties and other times I am interpretive dancing in my room, but regardless, it plays a significant enough role in my life for it to make my list of college lifesavers!  

So here you have it, my top four 'lifesavers' that have helped me make it through college.  I have a feeling that these things look different for everyone, but I think it's important to acknowledge those things that have helped you make it through the difficult circumstances in your life.  Because I know that i wouldn't have made it this far without my four lifesavers in my not so normal life.

When Sarah was first diagnosed with Crohns disease, over 8 years ago, I spent a significant amount of time thinking “when things get back to normal we will…..”

“Back to normal” meant that Sarah would be well, able to attend school and do all her extra curricular activities.  Gone would be the many doctors visits, new meds and stomach pains that we were currently dealing with.  Up to that point in time, my experience with illness had consisted of a reliable pattern of being sick, going to the doctor, getting an anti-biotic and feeling better within a few days.  It did not initially dawn on me that having a chronic disease meant that it never really went away!

Fast forward thru her highschool years, 2 trips to mayo clininc, one surgery and numerous hospital stays and I still found myself thinking  “next year, when she is better, she can live in the sorority house….  Or go to Europe to study abroad…. Or – fill in the blank of whatever a normal college student might do.”  It gradually dawned on me that “next year” might not be better.  

While this involved some grieving on my part- it also allowed me to accept and appreciate the present moment.  I don’t spend much of my time thinking about the future anymore. I find that the present gives me enough challenges and joy to keep me busy.  

I also find myself surprised at what has become normal.  It is routine to see  full sharps containers around our house needing to be taken to the disposal site. Normal to open the refrigerator to find thousands of dollars worth of intravenous feedings.   Almost comforting to listen to the quiet beep of her IV pump at night when she is at home.  

While a part of me is sad that we have become so used to medical interventions I am thankful at the ease at with which she has adapted and accepted these intrusions on her life.  They have become our “new normal”.

Everyday I am Fighting on the Inside BUT Fierce on the Outside.  I refuse to give up and I refuse to give in to my disease.  My life with Crohns makes each day an uphill battle, BUT it has also made me a fierce fighter.

This week is IBD Awareness Week and my goal throughout this week is to bring awareness to the disease by demonstrating that although inside me a battle is being fought, on the outside, I look just like everyone else.  I have often heard IBDers talk about the insensitive or sometimes flat out rude things people have said, just because we do not look sick.  I believe that if I can raise awareness for this disease, while demonstrating the severity of my disease, and simultaneously looking 'normal,' that people will begin to see just how deceiving looks can be!

Meet Paul.  Now say it in a British accent, it sounds more like P-ole...yeah, I know, not really that funny, but when you have an IV pole in your dorm room, you have to find humor where you can.  I spent 12 hours every night hooked up to a bag of IV nutrition.  It gives a whole new meaning to the term 'hooking up'...Not gonna lie, this guy puts a major damper on my social life!  The IV nutrition is called TPN (total parenteral nutrition).  Yes it looks like milk, and no it does not taste like ice-cream...it going straight into my veins, my superior vena cava to be exact. See, I look so super normal, BUT doing IV nutrition every night is anything but normal. 

One more thing, did I mention I can't eat? No that was not a typo.  The point of doing IV nutrition is so I can rest my bowels.  Since my body obviously doesn't like itself, hence the auto immune disease, it really doesn't like food either.   I love food BUT it tends to hate me, so right now, I am on complete bowel rest, but if I'm being honest, I sneak bits here and there, and I have no shame about it!  

Just a tid bit of information, the whole freakin world revolves around food! No joke, there is food at everything and everywhere, it is ridiculous and mildly frustrating!  But I digress...How many people do you know that can survive without food!?  Point and Case, I'm still not normal!

If you still think my life is normal, you are officially crazy!  My life is not normal, nor is it easy.  In fact, my life is kind of rough, and sometimes it doesn't feel like I'll make it through in one piece, but I always do (mostly in one piece). 

Between numerous hospital visits, 4 surgeries, like 8 picc lines, 1 port, 1 ileostomy, and more drugs than anyone should ever have to take, I try to live a normal life.  I still go to school, I participate in my sorority to the best of my ability and on the weekends, I still try to go out.  

I try very hard to do everything, but in all honesty, I can't do it all.  There are limitations and there are days when getting out of bed is nearly impossible.  I know I'm not the only IBD patient who feels this way.  But when I reach a day when I can't make it to something or reach my limit, and I have to admit I am beat, the worst thing in the world is when someone responds with, "well you were able to do x last night, so you should be able to do this." It is a crushing feeling to hear those words and although I don't cry often, when someone says those words, I almost always cry tears of frustration.  

Because it is impossible to explain having a chronic disease to someone.  How each day is so different and how I grasp normalcy every chance I can get.  My suggestion, is if something doesn't add up for you, ask, don't assume you know the answer, because chances are, you don't know the whole story.  And please don't hold my attempt or any other chronically ill persons attempt at being normal against them.

This week I challenge you to share this post and continue to educate yourself about IBD.  The more educated you become about chronic illnesses, the better friend you can be to those around you suffering.  And always remember, that things aren't always what they seem and even though I look 'normal' I live a very not so normal life!

Being chronically ill can make it difficult to make and maintain friends.  With being in and out of the hospital, limited time and energy, and a very unusual life, I have always wondered how me being sick affects how my friends interact with me.  I recently asked my sorority big sister and best friend, Jacie, to describe what it is like being so close to someone so sick and her answers were both heartfelt and inspiring!
 "Just like one's gender or age, your disease is... a part of your identity"-Jacie

"It makes us closer...because we are so open about bathroom talk [that] it tends to flow into everything else." -Jacie
I asked Jacie if our relationship is different from other relationships and she was very clear that my illness has made us closer.  
"There are very few things we don't talk about. It's not only the vulnerability that strengthens our friendship but we do our best to spend time together." 
Jacie talked about the importance of spending time together and how the time we do spend together is special, because it took effort to make it happen.

I then asked Jacie if she views me differently because of my disease.  She responded that my disease has made me even more "precious" to her, comparing me to a "glass figurine" or the "soft spot on a babies head."

In her final remarks about our friendship, Jacie sums up what it is like to be friends with someone so sick in a beautiful way!

 Having a chronically ill friend can be scary, but as Jacie states, it makes us closer, and the bond we have is special because we have been through so much together! But, I hope this interview touched your heart like it touched mine. Without Jacie, my not so normal life, just wouldn't be the same!