What if we made a video where we showed what I go through everyday with IV's, medications, and blood draws, and then showed a healthy version of me that I chase within a dream. So I became the dreamer, chasing my hope of being well one day. The project took a lot of time and was frustrating to do, but the end result was inspiring, it was a great reminder to never give up! It was a reminder that I WILL be well someday and that I have to continue to chase that dream in order to fight my disease. So today I share with you my dream of someday being well, in my not so normal life.
Last year while I was going through some very tough medical stuff and having to do IV fluids in my dorm room everyday, my communication class was assigned the project of making a music video. We picked a song written by one of the group members, Brian Stewart, and after hearing the song, an idea struck me. What if we made a video where we showed what I go through everyday with IV's, medications, and blood draws, and then showed a healthy version of me that I chase within a dream. So I became the dreamer, chasing my hope of being well one day. The project took a lot of time and was frustrating to do, but the end result was inspiring, it was a great reminder to never give up! It was a reminder that I WILL be well someday and that I have to continue to chase that dream in order to fight my disease. So today I share with you my dream of someday being well, in my not so normal life. Credit for the Video goes out to: Brian Stewart, Gracie Taylor, Sarah Brocker, Gray Shierholt, Elizabeth Winters.
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This is the DryCorp PICC cover that I have been using for the past 5 months. It has made showering a lot easier for me and I figured it might help you too! The concept is very simple. You insert your arm into the sleeve and then pump out all the air so the sleeve is air tight on your arm. Once you have pumped out all the air, you removed the plastic ball and place a cap over the valve. The idea is that the sleeve is now airtight and so you can shower, bathe or be around water without compromising your PICC line.
I have had a great experience with this product. Before using the DryCorp product, I had to wrap my arm in in Press'n Seal wrap and then tape the edges. This is both time consumer and tedious. But with this PICC cover I can put it on myself and feel confident that no water is going to be introduced to my PICC line. After putting on the cover, I would move my arms in various directions to make sure that no air leaks into the cover. Sometimes I would have to start the process over because I had not entirely secured the cover, but never once did I have water contaminate my PICC dressing. Overall I would recommend this product to anyone who has a PICC line. It was fast and easy and I was able to keep the same cover for 5 months. I would definitely buy this product again, and this the company is easy to work with and accommodating! Although it seems a little pricey for a piece of plastic, $35.00, I definitely fHope this helps because it definitely made showering with a PICC line easier in my not so normal life. Available on amazon and at: http://www.drycorp.com On Days like today, I wonder how I made it through. I couldn't eat because I wasn't in a situation that I could go to the bathroom, so I spend the whole day without eating much of anything. Plus I was more active then I every am, and I feel it. My head hurts, my stomach hurts, my feet hurt, my eyes hurt, and basically my whole body hurts. I feel like I got run over by a car, or a truck or a train.
Now I have to recover from today in order to make it through tomorrow. So off to bed I go to try to rest and heal and make it through another day, because days will turn into weeks and weeks into months and eventually I'll make it through these tough times, in my not so normal life. This is me earlier this summer with an ng tube down my nose and a PICC line pumping TPN into my arm. At this point I hadn't eaten for 3 weeks and it was awful. I couldn't eat because I was obstructed and had to have a tube just to suck all the gastric juice and bile being secreted. But here is my dilemma, my current medication isn't working so next stop is either tacrolimus (a transplant patient drug) or TPN. Total parenteral nutrition would mean no eating for an indefinite period of time. Rough. Crazy. Hard. Impossible? Would this be impossible, to knowingly deprive myself of the enjoyment of eating and instead receive all my nutrition via my PICC line? Well nothing is impossible, but if you were going to pick something that was as close to impossible as you can get, not eating would be it. The reason I would do TPN is because I know it would help. With the TPN I would have more energy and not feel nearly as Ill, I may even be able to things I enjoy and have a social life. So is not eating worth the benefits it would provide? I don't know, but if that is what we decide to try next for my Crohns, I am going to conquer the impossible and forgo food. As awful as this sounds, I may find that it makes my life a million times better and better is something I would like right now in my not so normal life. Real. I am gong to be real with you, right now in this instance. I am going to tell you what it is like to live with Crohns disease and it's not going to be pleasant, in fact it may even make you uncomfortable, but before you judge me for telling you these things, realize how many people live with these symptoms, and live with this type of life everyday.
By sharing this, I want you to understand what is really truly going on in my life and the lives of others with IBD. I want you to read about what goes on in my life so you can better understand. So please make an effort to understand what I am trying to tell you and together we can break the stigmas associated with IBD, because according to these stigmas, I shouldn't share my day with you. I wake up every morning and barely can get out of bed because even though I'm exhausted, I don't sleep well and the sleep I get isn't rejuvenating. First stop is the bathroom where I sit on the toilet for around 10 minutes while my bowels empty the liquid stool stored there overnight. But they only empty if I'm lucky. Because sometimes I wake up and food has become stuck, so every time I move I am in pain. I take a clear ensure and a water to my first class, hoping that the nutrition will be absorbed and not pass through my intestines too quickly. My my second class I have to go to the bathroom again, but if I start going to the bathroom then I'll have to go again and again, so I hold it. The longer I hold it the more pain I am in, and my butt begins to hurt and my abdomen begins to cramp, but I prefer cramps to judgmental looks I receive from others from my frequent trips to the bathroom. After my second class I race back to my room so I can go to the bathroom and spend another 10 minutes on the toilet. Its only the second time I've gone for the day, but my butt is already raw, "can the day just be over already?" The homehealth nurse comes to draw blood during my lunch and I sip on water and have another ensure, "don't want to rock the boat before my last class." After she leaves I rush to the bathroom again to empty my bowels, but on the way out of the room I grab my butt wipes I keep in my purse, "hopefully they will stop the burning." During my last class my stomach lurches and I rush out of the class room, I pull a nausea pill from my purse as I pass stoole yet another time, "this is really getting old." Back in class I pray I don't have to go again before class is over, and I barely make it out of class before I have to go again, my butt is completely raw and very painful at this point. I curl up on my bed and grab my computer. I have decide what medicine to try next: tacrolimus or TPN, so I begin searching on google. I snack on yogurt and sip on water and soon have to rush to the bathroom again. I can hear my intestines moving things alone and although my butt hurts immensely, I am just glad things are moving, because if they don't move through, I have to stop eating till they do. Dinner rolls around and I order a cheese quesadilla, I am not sure the chicken will be digested enough to pass through, so I stick with a couple bites of cheese, but I feel my stomach moving so I wonder how much time I'll have before I have to go the bathroom again. As I walk into my room, I have to go again, I've lost count at this point, but I know it's going to hurt. I'm about to go to a meeting where I can't really leave to go to the bathroom and after that will be doing homework the rest of the night. How many more times will I have to experience the excruciating pain of having to go the bathroom? How bad will my nausea get if I try to eat again? Will my acid reflux bring acid into my mouth as I try to sleep? Or will I not be able to sleep because of the prednisone? When will I be able to do a bag of fluids? What is causing my critically low potassium? These are all questions that plague me as I sit here trying to communicate with my readers. But these aren't abnormal questions, they are questions I am pondering moment by moment day by day but I have chosen to share with you so you can further understand my life and the lives of many others. I have shared this informationin my not so normal life. Sharing how I truly feel about my Crohns and how I am responding to my circumstances makes me feel naked. I have spent my whole life hiding how I really feel from others, and pretending that I am not actually sick. But the truth is, writing this blog is a constant reminder of just how sick I am and how abnormal my life has become. It's scary to share what is going on in a very personal part of my life with others, because I am afraid people still won't understand, and I am worried that with that I am doing I still won't make a difference, and that terrifies me.
As I share my story, I can no longer pretend that my life is just like everyone else's life and at times I can feel the stares of the people around me as they wonder, "how can she be as sick as she says she is." Well trust me I'm just as sick as I say I am and I've got the intestines to back that up. After 4 surgeries, I am missing 2 ft of bowel, have no ilesosecal valve and have various anastamosies: these things are not normal for a 20 year old college student. By the way I have no idea if I spelled any of those terms correctly, apparently my computer knows nothing about medicals things! I truly want people to understand what it is like to live with IBD. To understand how it affects you mentally, emotionally and physically, so I am going to try to be more honest, more real and probably therefor more offensive, but I'm not going to lie, poop isn't proper and Crohns isn't clean. Bottom line is that I am going to try to share more of the crappy details of my not so normal life. You want to know the truth? I am tired of fighting a constant battle each and everyday. I am tired of constantly worrying about what my body is going to do next, and having to miss out on the things I want to do. I am accustom to having to miss things due to being sick, but that doesn't mean it gets any easier. In fact at times it becomes harder, because the longer you fight, the more worn out you get, and truthfully I am worn out. It is times like these that I wonder if I am fighting a losing hopeless battle and just making it harder on myself by trying to do school. The truth is, I don't know if this is every going to get better. I can pray and take medicine and eat well, but I may never get better. That's the trouble with a chronic disease, it never ever is healed. It may go into remission, but it is always lurking around the corner, and that is scary. So next time you judge someone who is dealing with an illness, try to see things from their point of view and realize that a chronic disease is stressful and tiring. So take this blog and realize that the people around you and in your life have a lot going on and we should always be there for each other and help each other through, so those fighting aren't so tired, because sometimes I feel tired and like giving up in my not so normal life. To continue my tale from last year: I had surgery, got an ostomy, ostomy didn't behave, got picc line, and needed lots of fluids. So after I got my PICC line put in, getting fluids became easier, but my life kept getting harder. At the begining of January I was admitted to the hospital for a "bowel reset." It was supposed to be a short uneventful stay, but the morning after being admitted, my doctor did a scope and the news was devastating.
My doctor found severely active Crohns...everywhere. After seeing the active crohns my doctor put me on all sorts of medicines and recommended I didn't go back to school. I wouldn't take no for an answer and spent the whole week I was in the hospital determined to get back to back. After a week my Crohns looked exponentially better and I headed back to school thinking things would continue to get better. Things didn't get better and the medicine I was taking stopped working. I spent the rest of the school year doing 2 liters of fluids a day and getting up every hour during the night to empty my ostomy bag. I spent each day exhausted and every night sleepless, it was a terrible cycle. I started getting Tysabri infusions to try to get my Crohns under control, but nothing really changed. The medicine was scary, because it can cause a deadly brain infection PML. Each infusion brought anxiety and no change. Everyday I fought to stay at school. Even though I didn't feel like I was living, I finished off the semester with a 4.0 GPA, and began my summer. My doctor had asked me not to work in order to focus on my health. So I spent the summer visiting my boyfriend in Lexington and laying out in the sun, well sort of laying out in the sun because laying out with an ostomy and a picc line is ...interesting. But the first half of the summer went well with not too make complications. So I just kept trucking through the summer in my not so normal life. If I were to walk up to you on the street and ask you if I look normal, chances are you'd say yes. When I tell people how sick I actually am, the look at me like I'm crazy and say in astonishment, "you don't look sick." I try very hard not to look sick and enjoy looking nice, but why do I feel like I have to try so hard not to look sick. The answer is, life is easier if people don't know the details of my disease or how bad I actually feel. If I were to show you how bad I feel, it would make you feel uncomfortable, so instead I put on a smile and my makeup and face each day as if I weren't constantly battling a disease. I am sick of the stigmas associated with Crohn's disease and colitis. Why is it okay for people to talk about vomit, but if you talk about pooping everyone looks at you like you are an alien. News flash, everyone poops. In fact if you don't poop there is probably something wrong with you. So why do peoole pretend they don't poop? Why do others make me feel ashamed of my symptoms and why do I feel forced to hide what my body is doing? Society has made it hard for those who suffer from IBD. As if it isn't hard enough to deal with living with Crohns Disease, I have to hide my symptoms from others or feel judged. Those with cancer aren't stigmatized and forced to hide their afflictions, in fact those with cancer who are fighting it are celebrated as a hero! So why can't those with Crohns Disease be celebrated as survivors and champions? Everyone who suffers from a debilitating disease deserves recognition for everything they have to deal with. With IBD everyday is a struggle a constant fight, but not many people know about my fight and even fewer know the details of my struggle. This isn't because I'm ashamed of my disease, because I truly believe my Crohns makes me a stronger person. The reason I often do not feel free to share the details is because others act uncomfortable when I share the details of my disease. They ask how I'm feeling, but if I were to truly tell them how I feel and what I deal with they would look at me like I had grown a third eye. I no longer want to feel ashamed of my symptoms and I want to feel free to share what I'm going through with others, but how does this happen. It happens when people begin to raise awarness for IBD. As society becomes more educated about the effects of IBD on the body, the stigmas will begin to disappear. Similarly, I encourage anyone with IBD or any other disease to share their story. If we begin to put a face with IBD people will begin to associate it with real people. So I charge you to consider your own thoughts and actions concerning IBD. If you don't understand IBD, make an effort to understand it, rather then assuming that anyone different from you is weird. Lets begin breaking the stigma, educating others and putting a face with IBD now by sharing this blog, sending it to your friend and encourage others to learn more about IBD. I want to live in a world were people feel free to share their story with IBD and don't feel like they have to hide away to avoid judgement. I may look normal and act normal, but the truth is, I'm not normal. I don't live a normal life and probably never will but I want to be able to share my abnormalness with you. So I challenge you, BE PART OF THE CHANGE and let me share with you, my not so normal life. I had planned to spend today cuddled in my dorm room studying for my astronomy test that is tomorrow. But instead I got to spend today fully sedated for a surprise endoscopy. How many college students get to plan colonoscopies into their week? This girl does and I do it with finesse! I found out around 2:30 yesterday that I would be having a scope done this morning, so I quickly packed my overnight bag, mentally calculated what solid food I had eaten that day and thanked God for a boyfriend who does so much for me. So I'm not gonna lie I kind if like the feeling of being sedated. I always try to stay awake as long as possible as the room starts to spin and voices become muffled. But then waking up is just terrible because you have to WAKEUP from a nice drug induced sleep. So I typically try to hold onto my sleep for as long as possible, but today I woke up sooner then normal because I was nervous about the results. The nurse walked in and handed me the report before we had talked to the doctor, so I got to process the news before having to face my Doctor. Basically, the news could hve been better, and could have been worse. Things aren't terrible in my intestines but they are bad enough that I am going to be stopping my current medicine, Tysabri. The problem is that I've gone through all the typical crohns therapies so we are on to trying things like transplant patient drugs... Or TPN... Or something else like a drug trial. I knew that results of the scope weren't going to be good, but I'm still digesting the information and options we learned today. I just don't understand how nothing seems to be enough to heal my body and how things can keep getting Worse. I really just don't understand what's happening right now in my not so normal life.l |
AuthorI've got 8 scars and am missing two feet of intestines and my life isn't normal, but whose life is normal? I want to use my experiences to help you, even if it means sharing embarrassing experiences. I am also looking to break the stigmas associated with IBD in order to make living with IBD just a little bit easier. Hope you enjoy! Follow my Blog here by submitting your email:
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